I found you again

Hey guys back again!

No, really.

I mean I actually forgot I had a blog after my phone deleted WordPress off my phone.

I’m actually really happy I managed to find it again because I have been itching to write something lately and let you know how I’ve been doing.

My skin is still a problem. It was only a month and a half ago it got so bad I agreed to be taken to Emergency (it was a Saturday) and was given the full blast of antibiotics and oral prednisone, and 7 tubes of topical steroids to take home.

Needless to say I was at rock bottom when I agreed to use steroids. If you’ve found my blog you probably either have been through TSW already, know someone who has, or am fighting through it currently- so you would already know why I have been refusing the steroids as much as possible. And therefore refused to use the other 6 tubes of steroid cream.

I had been struggling onwards through work (I got a job, guys!) with my skin on display and making me uncomfortable when the combination of animals I’m all allergic to (I worked at a petting paddock where i’m allergic to all the animals bar chooks, geese and ducks, and am allergic to hay. Badly.) plus visiting a friends house for too long- who has two dogs- well my skin just couldn’t handle anymore.

I’ll write more later as Mum had just come home and I need to measure my window.

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Another day another dawn

Sitting outside, scratching in the sun.
I don’t feel great but I’m not the only one.
Struggle to get up, I just keep on sleeping in.
Feeling like I’m stuck, in someone else’s skin.
I hope the sunny heat will dry up all my ooze.
Think about how I really need new shoes.
Wondering when on earth this is gonna end.
No way am I gonna do a backbend.
No my skins pulled tight just like a balloon, and I’m never ever gonna wear perfume.
My skin keeps itching like the dripping of the tap.
Who knows, I might turn this rhyme into a rap;)
A most interesting way that I get to pass the time.
Try roast vegetables with a squeeze of lime.
The backs of my legs are very beaten up.
For four days I drink a pill in a cup.
Four times a day, and I always feel sick.
I really hope to get better- and quick.
But I know that’s unlikely, and my patience is worn thin.
Just take a look at the state of my skin:

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I know it’s that that bad, there are people worse than me.
But for the moment this is all that I can see.
I hope you and I get better, and every do we do.
Filled with hope and laughter, and patience too.
I’m struggling with class, my headspace’ so full of clutter.
I really need to get myself a decent light shutter.
Hope your family and friends all get on board.
Because mine, well some of them rely on the ‘well taught’.
Me and my Sahara desert I think is getting smaller.
Not that I’m ever going to grow taller:p
Skin, I love you- just go on and do your best.
To heal, and to be stretchy and somewhat like the rest.
The food I eat doesn’t make it very easy.
But I’m starting to pick up on ones that try to make me queasy.
A hot flushed face, a puffy jaw.
All the signs I know to look for.
Chicken, soy, dairy, wheat.
Foods that I don’t want to eat.
Sugar not too healthy anyway.
At least I won’t make it my mainstay.
Paleo is how I’ll roam my supermarkets, and hunt the yummy stuff.
Like spaghetti squash, broccoli, carrot, sweet potato, lamb cutlets, cauliflower, Brussels sprouts… Enough.
Cannot eat like this right now, at least until I see the dietician.
For now I will make research my mission.
So hope and love to all of you my friends, those who put up with all my mindbends.

What is normal?

Hi guys, long time no post:(
I haven’t really been posting because I had a self pity month or two, am now busy with my TIC fashion course, and frankly my skin seems to have hit a plateau of ‘nobody will flinch to look at me but I don’t look great’ stage.
My skin overall has improved greatly, especially the tops of the thighs and upper arms. However the inner elbows, wrists, fingers, backs of knees and thighs seem to be constantly in a state of flux, either red, itchy, scabbing or flaking. The backs of my thighs and bum are the worst- I itch and scratch them to bleeding and oozing every night so I dread going to bed. I feel like I have no self control every time I ‘give in’ even though i know that scratching is inevitable. My scalp and hair- now a finger bend and a half long- shed skin flakes and scabs like snow when I run my hands through it, so I have to muss and comb every morning to avoid getting dead skin over my clothes.
I just wish I could stop scratching…
I’m sure I have some other food allergies I’m not aware of like chicken, which complicates things. I have an appointment early March to see a dietician at the hospital to hopefully sort this out.
I avoid wearing sleeveless tops and try and wear long sleeves to stop people looking at my bone white dry skin around and my elbows with red scabs, and find it awful to wear bras with underwire. (Plus most of my bras don’t fit, which doesn’t help).
Strangely I have decided on doing a fashion course, which is ALL ABOUT being aesthetically pleasing to the eye when I am clearly not. Or I don’t feel like I am…
I’m very jealous of one of the Asian ladies in my glass, who wears corsets that bare the curves of the bust, and short shorts showing off creamy loooong legs that she finishes off with high studded white wedges. And a vintage hat on her head.
Think positive.
Think positive.
Uh, when I am more healed I can wear short shorts and bosom baring corsets.
No.
Eventually I won’t give a flying fudge whether anyone looks and comments on my shiny spotted and scabbing legs and I will decide to wear skin baring outfits or not purely on my own comfort level and weather.
No.
I can wear whatever I want even though I may not be comfortable with the staring or comments. There are plenty of people worse looking than I am and I should try to not think so superficially. And most people won’t stare or make comments because they have a brain and decide not to be rude, and the people who do ask and recommend going to a doctor for steroids or trying moisturiser or essential oils honestly mean to help. Even if that doesn’t help me- because only I know my body and I know those don’t appear to help at this stage in my healing.
It’s hard to not beat myself up over my skin. I’m so self conscious about it….
I’m sure most people don’t notice it.
Certainly I do though when I get up from a long time sitting and my pants tear away my skin as I get up…

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Just attached some pictures from the early days and more current. Most of them are the backs of my knees.
Hoping that the staph infection I supposedly have will be cured by the antibiotics… So far every time I have taken them I have felt a bit like throwing up. Only 6 days to go…

New year

I have an increasing suspicion my eczema is related to what I eat. Yes, I knew that from before but! Now I am actually starting to pay attention.
Top suspects- chicken, wheat, sugar, dairy and possibly beef. But chicken is a definite worrier- I love chicken! But every time I eat it within the hour I feel my face heat up, the under my jaw feels puffy and I scratch away…
Gluten is still a possibility especially regarding bloating which I have a problem with. Even though I get tested for the DQ2 and DQ8 gene and turned up negative I may still have problems processing it…
Sugar is hard to test because it’s in everything.
Dairy I get horrible gross yellow lumps in the back of my throat that smell awful, I think it’s called Halitosis? Whatever it is I try and avoid too much dairy but it’s hard because it tastes good. Gah.
Trying to convince my mum that going on a week long fast to cleanse my body before trying different foods is a good idea. She is still smarting at the fact she has no control over my skin- now I want her to stop trying to control what I eat? No way! (Actually she is considering it but she, of course, wants the dieticians advice. Because doctors totally haven’t screwed up my skin.)
Why do we have to fight so hard for others to realise the person who knows our bodies the best is ourselves?!
I have been using a different moisturiser on my skin, on the bits that have mostly healed and are just dry, and not scabbing. It’s called Rosken and it may sting a bit in areas where you have broken skin so don’t use it there! It’s quite a lightweight moisturiser unlike Sorbelene (the stuff my mum slathered on me since birth), which is very thick, and doesn’t let the skin breathe (and funnily enough was even NOT RECOMMENDED by my doctor as she said it causes skin sensitivities!!).
I don’t mind saying this because even though I am a definite subscriber to moisturiser withdrawal, I think it is most effective on areas of broken skin. When the skin is mostly healed but just thickened and creased like an elephants, and a bit dry I see no harm in using it infrequently.
I’m very frustrated at home because I find it difficult to be energised when I wake up, because when I do all I see are skin flakes and I can feel myself surrounded in my own skin flakes and I feel like I am not healing and get down. My parents don’t see how this affects my confidence in myself, although sure it’s superficial but that’s what society judges people on. Not to mention I cut my hair real short (supposedly I look like a Buddhist monk) and people will judge me for that too.
Oh and my scalp is still playing up and I scratch it heaps… So I have lots of scabs and flakes and when I run my hands through my hair it snows onto the floor.
It’s been almost 8 months since I stopped using steroids. I keep telling myself that I shouldn’t expect full healing yet but man am I impatient!
However the clues about my diet (my top suspects!) are making me more hopeful that the remaining healing to go, and the current sort of stagnant healing phase is due to the foods I eat.
My nipples are still being covered in tissues, which come off by themselves after a few days, and which smell. The backs of my knees are covered in .5-1cm red blotches and purplish white skin from the areas of scabs I scratch off, and the backs of my thighs are still scabbed, but at least not weeping.
Wrists have minimal scabs, left is better than right, and elbows have slightly reddened, dry skin and heal quickly.
Face is constantly shedding skin- I must admit my way of rubbing off the old dead skin by furiously rubbing with a towel or shirt is not the best way to heal though..
I’m getting pimples between my shoulder blades! (Hardly ever get pimples), my neck is dry still with deep neck creases, and the back of my neck especially at the hairline is dry and scabby.
The rest of me though is pretty good though, if not still a bit dry ie shin. I get tantalising glimpses of what real skin should be like and it makes me impatient. Bleargh.
Ah well, every day I get closer to finding out whats making my skin upset and what won’t.
Wishing all you TSW warriors strength and courage to continue!
Love Khai

5.5 months

It’s the first of December today. I felt it was about time I wrote something here, not only for myself when I look back on this, but for all the others out there who can share my frustration.
I am healing- and I keep telling myself that. But my skin is still not at what I would call healed (no open wounds or visible scabs).
Probably the most frustrating thing has been my nipples (if you’re squeamish too bad. TSW is not all rainbows.) as they have not healed, and just keep cracking, scabbing, oozing and repeat cycle.
I think my nipples have been this bad for at least four or five straight months, so I’m used to it now but that doesn’t mean I should be.
I have been experimenting with aloe Vera but haven’t been very consistent, but my one constant is that I let them air dry and go braless when I can.
Not only is it freeing;) but this seems to make them more comfortable.
Sometimes I despair and I want to put some steroid cream on and then I feel my steel backbone harden at the thought because they were what probably started me down this road in the first place. (I have many allergies, including a probable one to chicken which I have only really isolated recently, so steroids cannot be entirely to blame for my skins state and I refuse to believe that what I eat and environment has no impact).
I did my nails recently, and they look quite nice, even against the scabs on my finger joints, the redness and dryness. My chickens attempted to eat them they were so colourful.
The backs of my knees are probably tying with my nipples for the position of most healing needed.
I feel very self conscious of them, particularly when there are people following behind me up stairs, actually mainly just people behind me in general. Not that people pay much attention to backs of knees anyways.
Is it awful of me to notice just how much other people look worse off than me and feel better? Like at school I would see someone who is quite plump or has huge arms and I know that if offered to switch with my problems they would do it in an instant.
I guess just from looking we can never know just how heavy other peoples burdens are.
My scalp still isn’t a picture of health but you can’t really tell so I don’t mind if it’s a bit scabby.
My neck still has two deep wrinkles in it- I’ve been doing some exercises to try and get rid of them but I think the damage is done. It really isn’t too bad. It bothers me but I would rather the wrinkles than more eczema or something else.
Backs of my legs are still not brilliant- my knees are a pale white/purple colour from the scratching and dry skin, and the purple is from the scarring, which I’m not too worried about because I would rather have purple skin to scabbed and cracked skin.
Haha my body can have a rainbow of colours!
It’s funny, but I have become more interested in my appearance as I’ve been going through TSW. I guess I’ve realised that I can look good even if my skin is trying to heal, just by putting on a shirt that fits, by ditching any pastels or pale coloured clothes because they look weird on me, or by satisfying my inner world of colourful by expressing it outside on my clothes in patterns and swirls and… Simply colour. The colours I like. And the clothes that fit, that flatter my body shape- highlight my small waist, and high waisted anything will probably work.
I just got a thought then that prattling on about myself in a good light- my body being presented in a good light- is big headed and very much who stoking.
Thank you brain, for that interesting thought. Yup, off you go.
Noticing is part of what is helping me. Noticing when I stress, when what I eat disagrees with me, when I’m upset for some reason. Doesn’t matter why I’m upset- I’m upset so let’s acknowledge that first.
I find it interesting just how easy it is to write/type like this. It’s much easier than explaining out loud to myself, let alone anyone else. Maybe seeing it written here I can distance myself from the actual events, and pretend it’s someone else’s story? Someone who I can sympathise with, who happens to sound a lot like me and who I want to be friends with and support.
Because sometimes I am am not friends with myself.
I wonder if anyone will actually read this. Will they understand my thoughts? Does it matter? I’ve been told my thoughts flit quickly from one topic to another and it’s difficult to follow them sometimes. I do hope you can keep up.
How are you feeling right now?
I’ve found that paying attention to my surroundings- for example the music I’m listening to (Clocks by Coldplay) can help distract myself from thoughts I don’t want to entertain.
You’re right, it’s not easy to do when upset. But there’s no harm in trying.
Doesn’t Demi Lovato have such a breathy voice? I’ve not noticed that before.
I have this feeling this entry is starting to sound like a diary entry- if it is, feel free to read. I don’t mind. It’s nice to have a distraction from the world and if that means exploring my thoughts and wondering what I’m going on about then by all means keep reading.
You don’t have to answer me, but I’m very curious about relationships and how they are impacted by our TSW. Would you mind telling me a little about yours? Only if your comfortable of course.
You probably want to know about my own experiences- maybe you have read a bit about the same topic in my other earlier entries.
I don’t think I have much experience in long lasting relationships. My interests have been varied- the girls I have admired or I would not jeopardise their friendship for anything more, and the guys appear to be drawn like honey (and I’m not sure why, but I got another thought that it would be ego stroking to ask them why they like me, as it’s self validation, shouldn’t I have more confidence in myself? What interesting thoughts…).
I seem to be interested for a brief period as I get to know them, then the attraction fades and the guys are left with mixed messages and I let them know about my feelings as to not lead them on. Even if it clearly hurts them- and then they still want to be friends, but I can’t bear the thought of hurting them- actually they control their own pain but I don’t like it when others feelings are hurt and avoid such situations. (All conflict in general I avoid and need practice managing without sudden and very emotionally draining outbursts. )
Do any of you read fanfiction? I feel I have just had a Professor Snape moment- Emotionally draining outbursts indeed!
I think my vocabulary has expanded itself- not that I mind and it seems to come to the forefront when I am writing.
Why am I so shocked that I can actually do an English essay and get 88%? I know there isn’t anything wrong with most of my grammar or spelling and I guess it must be the structuring of ideas that I need practice in. Hmm.
I’m rambling a bit now. I trust you don’t mind.
Would you like a bit of comfort?
I find it quite comforting that my skin- nor anyone else’s is going to be perfect, as perfection doesn’t exist.
*Even I don’t fully believe the above statement at times, but when I can actually think for myself and ponder it is very comforting and I hope will be for you as well.
Every second you are healing- whether slowly or quickly and I wish you the best of what are are now.
Go TSW Warriors!
Khai

Stuff

Hey there. How’s everyone doing?
I seem to be doing okay. My skin’s healing seems to have hit a bit of a plateau, but it’s still healing, albeit slowly.
It’s definitely warming up here- I think that may be helping get the blood around.
Although getting sweaty is still something I prefer to avoid as it makes me itchy.
Just letting you guys know how I’m doing… Stay strong. You can do it.
Love
Khai

November

I think I gave up steroids sometime mid may, so that would make this month 5-6? of TSW.
I’ve been finding it very challenging, mentally this year to go through school and finish, to thinking of my future as I scratch away.
You hear and read many stories about how tough it is on relationships going through this, and I definitely agree.
Even acknowledging myself as someone worth being liked by someone else is difficult for me. Why?!
I guess it’s because I have always been at war with my body. Why won’t it just heal? Why do I get itchy from cats, dogs when my friends don’t? Stupid body.
And I had no idea I was hurting myself or even thinking in this way until my helpful counsellor pointed this out to me. So thank you for noticing!
You’re probably wondering what my skin is like at the moment. Well, as it getting hotter my skin gets dryer. But my wrists are improving, my left butt cheek and upper thigh are mostly clear and the worst areas are only the other side, knees and scalp.
My neck still has deep creases that are always red, does anyone know a way of getting rid of them?
Still think I’m losing a bit of hair but that might be me getting paranoid.
Go TSW warriors! Stay strong, guys, all of us are here for you:)
Love
Kai

Op shopping

Not sure if I’ve posted about this before but I really love op shopping. Man- some of the stuff you find is brand new and hasn’t been worn! Or some old vintage piece you can look unique in…
I was looking in the mirror with my hair pulled back as I was trying on a dress and I noticed something odd.
My hair is pretty dark- but my face looked off.
Turns out it’s because my eyebrows have started falling out!! I read about this happening but I hoped it wouldn’t… Haha oh well. I guess I can pull off the whole Mona Lisa look:D
I’m sure they’ll grow back better than ever… It just looks a little odd.
Hmm. Anyone else rockin the Mona look?
Khai

Update

I haven’t posted about my TSW in quite a while so I felt I needed to.
Skin update:
Back of upper thighs and butt- patches of scabs that ooze and I keep scratching.. I really want to take some salt baths but still haven’t gotten heaps of salt yet. Gotta work on that.
Back of knees- dry, flaky with shiny half stretched or oozing scabs that I’ve picked at
Scalp- good when I don’t scratch. When I do, scabs and white flakes are very difficult in messy curly hair…
Arms- mostly recovered. Still dry but majority is smooth, with occasional small scabs (one mm size) that heal quickly.
Wrists- topside of wrist looking at hand barely noticeable but has big hard scabs on it that are healing slowly. Underside of wrist has some open cracks and red scabs that are taking longer.
Nipples- still oozing and having to be either completely uncovered (and I scratch them at night until they are raw:( or with plant leaves (cabbage) stuck onto them, or currently bits of tissue. Tissue seems to be working best atm as when moist, and then dried in outside air contact moods to nipple shape and easy to wear w bras.
Face- mild in comparison to back of legs/knees. Flaky, dry and occasionally red but okay mostly.
White flakes around hairline.
Hair- I need to wash every 4-5 days, as it’s beginning to get warmer. No shampoo/conditioner means less pain and stinging when washing but it’s still unpleasant. Back of legs sting from bath too.
Skin takes at least 3/4 day to put more oils on skin after washing/bathing. Takes even more time if I use hot water- which I have learned to avoid.
Most interesting is that a guy has expressed interest in me (mutual interest;) saying my skin is soft and pretty. Woah. Yeah… That’s a shocker.
And we’re both very interested… Physically. He’s been very understanding about the eczema too, and is chomping at the bit I think to see me healed to my satisfaction…:D
It’s been a bit of a mental u turn to start rewiring my brain into a beauty is on the inside, sort of thinking. I know, I know we’ve all been told and accept beauty is not skin deep but that’s what people focus on yeah? And it’s also a bit difficult to reconcile my love of clothing and clothes design with this full body love, that embraces the inner self and other shell we are housed in…
With the clothes, I now realise it’s what makes ME feel beautiful, sexy and confident rather than wanting the figure others have because my body is my own so I can love it or hate it. (And I’d rather the former, as the latter wastes energy I could use on other things.
I think it sucks that my own body image has been hit so hard by the TSW- or my previous body image prior to TSW wasn’t great to begin with and TSW made me more aware of this.
I have found certain words like; beautiful- strike very deep and powerful conflicting emotions within me. I would not feel comfortable applying this description to myself- but when my SO says I am I am more inclined to believe him. Tentatively I would identify with pretty, and cute but beautiful is almost a foreign concept I would only apply to others.
Life is such a learning process and now that I am at a functioning state of healing TSW I can say I am glad that I went through it. Even in the beginning of year 12 where everything spiralled out of control and I got horrible anxiety and depression I stuck with my beliefs and now my skins recovery is so incredible my GP is amazed, saying she had thought it impossible. (Coming from someone who recommended topical steroids and hospitalisation I was that bad).
I can’t say this journey was easy- and I won’t- and it’s not over yet! But I can say it has changed me for the better.
I’m glad this has happened when I’m this young, as I think those who have to climb steep mountains early in their journey can look down and get a greater perspective on things that are really important to them and what inspires them to want to be greater than they think they can be.
On that note, stay strong TSW warriors! I believe in you- It can’t be easy but the person you become because of this, each and every second you are healing is something worth striving for.
Love
Khai

Warmer weather and being frustrated

The weather is starting to warm up here- which equals larger and larger amounts of skin exposure. And funny looks when I wear a scarf.
Fortunately, even though my neck had regressed a bit in appearance (red lines), the skin on my neck has very little visible scabs (except for the very nape of my neck which is covered in hair) so I can get away with not covering up.
I bought several long skirts recently, one of which is more see through than I realised. Both are light and summery while I can cover my legs, a definite bonus.
I did wear a sleeveless dress today, with a skirt that reaches just above the knee. So it does expose some healing patches of eczema. But it’s on the backs of my knees (and one isn’t that bad anyway) so, so far no one has commented.
Going sleeveless however was more of a challenge for me.
I know that if people had any decency they won’t laugh or make jokes at my skins expense but it’s hard to convince myself.
So I brought a light cardigan along, which proved to be a good medium between exposed and not exposed skin.
The cardi only comes to the middle of my lower arm, so it exposes the grey/white/dry/pink/scabbed skin of my wrists while covering my elbows (which also have some scabs).
I’ve been brave though! While I was with my friend I ditched the cardi altogether and she didn’t notice my skin until I “shoved my arm in her face” (her words) 🙂
I feel very pretty today. I let my hair dry naturally so it curled all over the place and put it in a nice messy bun, and my skirt makes me feel all wild and feminine;)
I know that one day, my skin will heal so I will be comfortable even in the ocean without stinging. It’s healing and getting closer to that goal everyday.
And even if it takes a while it is going to be SO worth it.
I’m going to keep plugging away here and hope my words encourage you guys.
Pictures of my wrists attached.
Khai

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