Going downhill – February updates

it’s been a little tough lately. so I thought I’d update my progress as it is a good way for documentation of my TSW journey and it does help me to stay positive sometimes just to write down my feelings or at least REMIND me to strive on…

Thursday, 13 February 2014

My hands are very sore Sad smile it’s times like these I really hate TSW. It’s hard to the normal things like using keys to unlock my front door, like twisting the key makes my fingers and hands very sore. Worse is peeling an orange for my boys to eat and the juice gets into my cracks F*CK that man! I should just buy some latex gloves. Lucky typing is still ok cos I need write my thesis. Ok back to work.
Friday, 14 February 2014
The back of my neck is flaring pretty bad at the moment. It weeps a little too. Very very blotchy. PMO.

Just visited http://isaiahquinn.blogspot.co.nz/ blog. Can’t stop crying Crying face He started TSW soooo young, my heart is so aching Broken heart I’m glad he is bit better now. What wonderful parents Isaiah has, they stay positive and are so caring of Isaiah. He also has a beautiful sister too who always smooches him Red heart

I read some of the comments were about “blaming” of why the parents agreed to use such strong steroids in the first place. Like WTF man no parent will ever harm their child. Obviously parents who use steroids on their child dunno and were directed by the doctors who they trust. Please don’t give unsupportive comments to parents and carers of TSW sufferers, I believe it’s just as hard for them to see their child/love ones go through TSW than having TSW FFS!

Monday, 17 February 2014
Haven’t been sleeping well. It’s very hard for me to fall asleep recently (past month), it is of course much better than a few months ago (zero sleep pretty much) but just before xmas and new years I was sleeping around 10ish and waking up at 1 ALWAYS and then it’ll take me awhile to fall back asleep again then I’d wake up around 4ish and then 7am I’m up for the day. Nowadays, I toss and turn, scratch and itch to about 2am then fall asleep finally. I feel like my skin is not improving like before because I’m not asleep during my skin repair time: 10pm-1am. I’m feeling very down today, keep slapping my slap and getting frustrated as the house is messy, deciding what to cook for dinner, can’t concentrate on writing my thesis… just very frustrated and low today. I hope I can get my act together tmr again. I really need to focus on writing. I just feel like sleeping today. My skin has gone worse over the month and it’s getting to me today. The back of my neck feel very uncomfortable and hands are sore and cracked.

A friend also turned up unexpected yesterday and I wasn’t prepared to see any friends so was a bit uneasy and I know I go out nowadays but I still hate seeing friends as I don’t want to be in a social environment when my self-confidence is rock bottom. My thesis has been haunting me everyday time is ticking away so fast. I hope I can really rest after I hand this in. I just want to rest and really organize our home... my life.

It’s just so hard being a housewife and mum, I’ve been so home bound ever since I got pregnant, plus first pregnancy I was going through TSW too, and then after much of the times I had bad eczema and was going up and down with my skin. I’ve never been happy freely. I’ve had many happy moments but my skin was always haunting me constantly. I hope I can be happy after this TSW is over. My lips are all cracked and sore, my nose is raw from face slapping. I hate myself. Depressed day today. Anyways gotta cook dinner


Personal feelings towards Oral/Injected Steroids, Cycloporine, and Prototopic during TSW or as alternatives
I know of some ppl who is thinking of using oral or injected steroids or maybe Cyclosporine or prototopic alternatives to ease the TSW pains. My PERSONAL opinion: don’t. Just bear the pain. It’s like another trap I think. I know it’s fucken painful and u want to die and it absolutely feels like u r dying during the first couple of months of TSW! But u have withdrawn for a month? 2 months? 3? 4 months? So why go backwards? Look at all the TSW veterans! They just strived on and have healed!! Look at my face!!!! I’m still in pain but I have to strive on and it’s getting better. I know because I have been through tSW so many times – 6 times! So I don’t want ppl going back on drugs: steroids, just to pain relieve then their healing journey lengthens and won’t u get worse rebound effects later? I dunno, I don’t like the idea. Sorry. I know some doctors are suggesting it too. Sigh. It is another quick fix they are doing. Really don’t like the idea Sad smile

Sunday, 23 February 2014 8:40 p.m.
My kids are driving me nuts lately. 2 year old and a 1 year old. Always wanting to be independent but can’t quite get there; like feeding themselves, putting on socks, brushing their teeth properly… they are so messy which I know it’s a phase but it’s fucking annoying ok. I wonder if I didn’t have to deal with TSW would it be better? Is it just me or do I just have no patience? I mean they are the most adorable kids but I just can’t control my emotions lately. I get ticked off so easily. Just like when they hold their spoon full of food in the air but they also have a mouth full so can’t put it in their mouth yet and then it gets on the floor and when I help they throw a tantrum……it’s like………………………. Sigh……. I’m so angry at myself for not being able to stay calm. I mean seriously it just aint a big deal just clean up the mess afterwards then but it’s like FUCK I cbf cleaning! Sigh it is just me I feel like I’m such a bad mother. I know I shouldn’t beat myself up but it’s just really all within me. I have to sort myself out! Maybe it’s just the lack of sleep. I mean I guess I have high expectations too maybe, I thought things were improving and now I’m in a flare and it’s affected me a lot again in terms of sleep and mentally. I’ve been depressed again and just angry again at so many things.

I found this again to read (previous email from Kat who couldn’t comment on my blog), I have to remember this:

No one said it was easy. But you are a tough warrior, that's why you have been given this!! Everyone else would faint lol and puff out. But not you Cuzzie! Your life is strong and like a tower of diamond like invincible Buddha light! That's why you are challenged and that's why you will absolutely WINNNNNN!!!!!!!!!

"You also are a practitioner of the Lotus Sutra, and your faith is like the waxing moon or the rising tide. Be deeply convinced, then, that your illness cannot possibly persist, and that your life cannot fail to be extended! Take care of yourself, and do not burden your mind with grief."
I love this quote by Nichiren Daishonin. He wrote it to a sick female disciple, who had been also taking care of her mother in law who recently passed away.

He encourages her that because of her diligent faith, she can be convinced that her illness will not last further.

He urges her to rest, rest, rest her mind and not worry about things that cause her more burden or suffering. In a way I feel he is saying that there is no need to regret the past.
You are my hero! Yes you must WIN over TSW. Absolutely.

You already have my beautiful cuzzie.

You are a champion of the human spirit.

loves kat

Monday, 24 February 2014

Just read a beautifully written article, It made me all better from yesterday and lately

I love these particular quotes by Dr. Stephen Cowan, particularly meaningful for TSW:
“Good medicine asks what is the symptom trying to accomplish? rather than simply suppressing it. Our body has its own intelligence and yet so much of pharmaceutical advertising tries to convince us that there is something wrong with feeling symptoms. Much of my medical training was focused on stopping symptoms as if they were the problem. (This is like telling the body to shut up. It’s rude!) We don't trust the body’s intelligence. We think too much and tend to be afraid of feelings in our body.”

The most alternative medicine I practice these days is taking time. As a society, we're addicted to quick fixes because we have no time to be sick anymore. In emergencies, strong medicine is often necessary to save lives but most health problems in childhood are not emergencies. In those instances it takes more than strong medicine to get better; it takes time….healing is a kind of developmental process that has its own stages too…When we take time to recover, illness becomes a journey of discovery, not just a destination; we begin to see our health and illness as two sides of the same coin.

getting sick is not seen as a failure. Being healthy does not mean never getting sick. Life is a journey of ups and downs and … A resilient immune system is one that learns how to get sick and get better. Living too clean a life robs us of the information necessary to be fully prepared to recover.

♥♥♥♥ I look forward to ur lessons my lovely boys ♥♥♥♥

"Pushing your buttons is a spiritual practice, and children are our spiritual teachers.
You don’t need an expensive spiritual retreat to become enlightened. Your little sage-teacher is right in front of you, offering you true wisdom free of charge!

Children watch our every move when they're little, studying our inconsistencies as they try to figure out this crazy world. And they will call you on it. When a child pushes your buttons, remember: they are your buttons, not hers. Take the time to listen to what your child is trying to teach you. One of the secrets of parenthood is our willingness to transform ourselves out of love for our child. When you're willing to look at your buttons, you open up a deeper self-awareness that is transformative for both you and your child"

No one believes me.

As I thought emotionally I was ok again. My family started giving me advice on what to put on my skin to reduce bacterial infection and inflammatory. I said no. they were very gentle mannered but I was not wanting to listen to that crap. I told everyone that I am doing moisturiser withdrawal and it is working for me. But no, they kept going and I felt like they were ganging up on me telling me to do stuff I didn’t wanna do.  I later started to cry in my room when everyone was gone. No one believes me. It just hurts me. I know they want to help. But if they understood what TSW is they would not advice me to do this and that. it is a DRUG WITHDRWAL rebound I’m having here. it’s NOT ECZEMA alright?! Have they read about moisturiser withdrawal? Have they read the links I sent them about TSW? sigh. I will fucken prove to u all that I am right and will heal the mother fucker out of this Topical Steroid Addiction!!

Today’s progress pictures
Anyways here are the pictures of today at Day 224 off steroids. Face is ok healing. Neck (front and back) flaring and itchy, weeps when raw. Hand are flaring pretty bad and rotting away… Back of legs flaring still and weeps when raw same with hands.

Well my hands kind of never really flared when I started TSW, it kind of just got better looking back at the photos (months 1-5), but I though it was weird cos I applied lots of TS on my hands on a daily basis. So tis is the time now to flare… alright… go for it

BTW I downloaded some articles related to TSA, and uploaded to my blog under Research Articles, extra stuff for u all to read Smile with tongue out

OK. Thesis writing time now.


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


  1. I'm in a flare right now too, but after reading about the moist healing method, I've started using hydrocolloid dressings and i highly recommend them! I tried putting it on half my wounds and can see a big difference in the rate it heals! Also it helps with the itch so it makes life a lot more bearable. You can read about this here:
    Hope it helps you! Good luck!

    1. thank you kei, i had read a bit about it and will look into it! thank you for sharing hope ur flare eases up soon. my flare has gone down already :)

  2. Hi, You are doing an amazing job of carrying on! I had three children under four; the first two boys 18 months apart so I know what that is like and I really admire what a great job you are doing. Reflecting on your parenting and going through TSW. I am in Taranaki and am at the tail end of TSW as my use was only for 18 months of hydrocortisone around my eyes. It has still taken 5 months to really start to improve. You have made an amazing improvement and I love your determination and spirit. Do you have to do your thesis now? Just be kind to yourself - what you are going through is exhausting on top of parenting toddlers (completely exhausting in itself!). Carry on the good fight. Don't worry your fellow TSW sufferers believe you!

    1. Thank you so much Lisa! I'm glad u are healing well, veterans like you really do give us hope! yes I really gotta finish my thesis I can't suspend/extend it anymore, it's not that bad, just gotta concentrate and I do give myself a break day when TSW symptoms or sleep has been really bad. Thank you for your support it's nice to hear from another Kiwi! xxx