Appearance Diversity: World Psoriasis Day - Hanah's story.

Today is World Psoriasis Day. I'm featuring a guest post by my gorgeous friend Hanah. She has psoriasis - an inflammatory skin condition - and she does so much to raise awareness of the condition. When I saw her promoting the cause on social media, I asked her if she could write a post for my blog.

When I read her words, it struck me how confronted people are about skin conditions. Any skin condition it seems. The questions she answers are similar to what I am asked - and so sare the recommendations for cures. I am forever wondrous (and relieved for the empathy) that while people's conditions - whatever they are - may be different, we can all relate.

Meet Hanah.

"A little over 10 years ago, out of nowhere, I broke out in red, itchy scales all over my body. It was soon diagnosed as psoriasis (suh-rahy-uh-sis). I don't think I have to tell you; this wasn't the easiest thing to happen to a 16-year-old girl at high school.

Since then, psoriasis has impacted my life every day on and off. There have been days where I have kept myself covered rather than wearing bathers or shorts; and days where I couldn’t go to work, because my psoriatic arthritis was playing up in my feet and I couldn’t walk. I’ve hidden parts of my body when photos were taken and untagged myself from Facebook photos. I’ve spent thousands of dollars on treatment options that were time-consuming, disgusting smelling, difficult to administer, and didn’t work. I’ve spent days throwing up from drugs that made me sick.

Most significantly, I’ve answered thousands of questions since that time about why I am ‘covered in red spots’. Most commonly, when my skin is at its worse, I am asked if I have chicken pox, was burnt in a fire, or if I have sun-baked too much. For the first couple of years, when I was covered almost head to toe, the sunbaking question always annoyed me the most, because it put the blame on me. When I was about 18 and working in sales, a lady lectured me for sunbaking and getting burnt and it was mortifying.

Then there was the pregnant woman who jumped back in fright and said (not quietly, either), ‘Is that chicken pox?! I'm pregnant, you have to stay away from me’. Thanks for turning my disease into something to feel guilty about, pregnant lady. Another time, my cousin (12 years my junior), who was about 6 at the time, said to me, ‘Hanah, I liked you better before you had the spots’! Being very young and self-conscious at the time, it hurt a little, but the innocence of the question makes me laugh now.

Nowadays my skin looks substantially better than it did in the early days (the drug I’ve been on for the past year has been very effective and cleared up most of my body). After initial questions these days, I’m then lectured about how to ‘cure’ it. Comments like ‘My friend had psoriasis and she cured it with X’. And ‘Oh yeh, I have dry skin too. You just need to moisturise’. I’ve snapped at sales people in shops who have told me their ‘cure’ and lectured me about how I am doing something wrong to treat it.

I’m a lot tougher than I was as a teenager and most questions don’t faze me now. It’s good that people ask (polite) questions, because hopefully they will learn something. I can only imagine how hard it is for very young children with psoriasis, and I hope the awareness that comes with World Psoriasis Day will help you feel confident and not hide away – it’s not worth hiding, and in fact, sun is so good for psoriasis that it’s worth showing some skin at the beach!

The disease needs more awareness and understanding worldwide – and hopefully one day there will be a cure. Thanks to Carly for featuring this piece and helping raise awareness of this disease. I'm writing this, because it's therapeutic – and because World Psoriasis Day is so important for raising awareness and supporting people who struggle every day hiding their skin.

Remember, psoriasis is a chronic skin disease that is genetic and not contagious. There is no cure, however there are treatment options to manage it.

Get more information about psoriasis, treatment options and support from the National Psoriasis Foundations. Participate in World Psoriasis Day."

 

 

New touch. Life after skin hunger.

I've been experiencing new touch. I realise I'm far from experiencing skin hunger now. I can't even remember what it's like to yearn for touch after doing so for years. It's like this frequent touch has erased all loneliness.

He holds me so tight I might burst. My love is so willing and eager to touch me - day and night. Sometimes I've pushed him away, because I'm not in the mood - and then I feel guilty because of just how unreserved he is, and remember how much I wanted this touch.

My boy has been touching my face. He makes my ear tickle - I only know what it feels like to have skin removed from outside and in my ear. That's clinical touch, never pleasurable touch. (Except for the surgical removal of skin - that feels amazing! I joked to him that having my ears cleaned out at the hospital feels so good that we might have to introduce a surgical ear vacuum into the bedroom.)

He feels the contrast of an oily face in the day and a dry rough and flaky face in the morning. There are a few hours in the evening when my face is at an equilibrium - relaxed enough to be paler and supple, and the cream is soaked in.He caresses my face with the same tenderness - no matter how my skin feels or looks. He says I'm most beautiful in the morning before a shower. I still don't believe him.

If only we could see ourselves as our partners do, hey?

-

Abu Dhabi airport was a caring experience. I had a brief stop there on my flight home from London.

After going through security upon arrival, I was ushered silently to a seating area where I was gestured to wait. I was so worried, not sure why I placed in a holding area, and really wanted to have a shower in the two hour stop between flights. Finally a senior security officer called the doctor for me, to see if I was ok after the flight from London. I told him I didn't need one and that I'm always red. He thanked me and smiled and let me go. While it was initially a little scary and I envisaged all sorts of tabloid border security TV show type situations happening to me.

I had a shower. The lovely cleaner attending the bathroom said she had a 12 hour shift ahead of her. She works 12 hour days in that toilet block with only one day off a month. We chatted and she told me she was from Uganda, working at the airport and thinks of her family back home every minute of the day. She asked me if I was going to dry my hair, and then ushered me to sit on her chair under the hand dryer. She then - without hesitation - dried my hair with her hands, so gently and thoroughly. What a wonderful woman. I hope she gets home to see her family soon.

It was so nice. I know that I must seem to always be banging on about how people perceive my skin/appearance, but when something like this happens - when a stranger touches me with no hesitation or questions or fear, it is amazing.

-

I've had two manicures while on holiday. One in Earls Court - just because I wanted to rest and be pampered, and one in Melbourne. While a couple of questions were asked - "is that eczema?" - the makeup artists provided the same level of service to me as they did to the other clients. That sounds like a silly, paranoid statement I know, but hesitation and a low quality haircut and interaction has been my experience at hairdressers.

I never wanted anyone else to touch my hands. While my hands and nails are beautifully shaped like my mother's, and quite soft and not very lizardy, I never want people to be put off by loose skin or the oiliness. I don't want someone to think that I'm contagious, and I don't know how to tell them that I'm not if there's a language barrier.

These two manicures were lovely - relaxing and pampering - and my nails looked great. I feel like I've gotten over my fear of rejection and recoiling of hand holding by nail technicians. And now I'm addicted to manicures - off to have another very soon! I might make it a regular thing. I've also had some consultations with hairdressers and makeup artists at a wedding fair - and they were so amazing! I said to Cheryl that I was so happy with the consultation that I felt 'normal'. Normal you know!

-

Through reading others' experiences about Ichthyosis and also writing my own, I've delved into some difficult times of my past. I've been thinking about how my oily cream has been an inconvenience to some people in my life. I've constantly felt guilty about getting my cream on other people when hugging them and touching them. This was probably because of how people have reacted to it - people close to me even - complaining about my cream staining their clothes and cleaning up immediately after I have touched something in their home. This really hurt. I'm not sure whether people realise the impact of this 'inconvenience' on them.

While I know that getting things oily is something that is just a part of me, the reaction and complaints from others is the reason I feel guilty today. It's the reason I'm hesitant about giving hugs. I always rub my cream off Adam's face, and brush my skin from his clothes. He tells me never to apologise about me getting my cream on him, because that's the way it is. But I will always remember how those around me used to react and feel annoyed about my cream, so I will always apologise.

-

I've realised that while I'm not a fan of the term 'normal' and feel proud confident in my own skin (and every piece I leave behind), I still have to build my confidence when it comes to touch. I'm so glad Adam has taken my hand and helped me overcome my own reservations of being touched.

 

My skin hunger has been satisfied.

I've written a lot about how my skin was hungry. Hungry for moisture, but also hungry for touch. For so long I yearned to be touched - dreaming of the times to come, remembering how long it had been since. Skin hunger is sensory deprivation, and it's proven to result in a failure to thrive.

And now, I am touched, often.

My boy, he wants to touch me, and he doesn't hold back for fear he might hurt me, or that much of me will end up on him (it's inevitable with Ichthyosis).

He can't get close enough, asking me to stop what I'm doing for a hug, holding my hand when we walk and drawing me close when we stop to wait for traffic to pass.

My skin hunger being satisfied has changed my life. At times my skin feels as smooth as his. I don't wake up as scaly as I used to and I haven't had an infection for months. Touch really does soothe it. Loving touch is healing. It's more than pleasurable, it's life-giving.

I'm a marsupial in the warm pouch of his arms.

I fall asleep on his chest, my ear hearing that his heart beats fastest when I'm close.

He's the big spoon and I'm the little one, my body shining with warmth.

His touch is a salve - as critical to my needs as my cream is.

Some have said I'm glowing since I've found this love.

I think he's my sunshine, making me glow, and grow.

My skin hunger is satisfied and it's most wonderful. I'm thriving.

Visit my series on skin hunger:

Untouched

Skin hunger

Interview with sex worker Rachel Wotton

This skin, it's hungry

Interview on ABC Radio National Life Matters

 

On 'normal' and cures and pride.

Sometimes people compliment me when my skin looks paler than usual. It's as though I'm five shades closer to a white complexion. (Ichthyosis-less, my South African heritage would probably mean that I'd have pale brown skin.) What they're not seeing (or feeling) is the pain on other parts of my body and the itching. And while these compliments are well meaning - and who doesn't want to be told they look great? - I can't help wondering whether looking paler is the path to being normal.

Normal. What's that?

It's as though the path to 'normal' is the expected path I should want to take. When people tell me that I'm normal just like everyone else or that I'm doing things that normal people do, they don't understand their good intentions are quite othering. 'Looking past' my face or coming to some sort of epiphany that I'm really quite 'normal' is naive and shallow. It's as though someone thinks they've done a good deed for not lumping me in the other category - the one where people are not 'normal'.

My blogging acquaintance Roni - a proud woman of colour - writes about the phrase "I don't see your colour". She writes: "When you tell me you don’t see my color, you are basically telling me that you don’t see a huge part of who I am and that doesn’t help me. What I want you to say is, 'I see your color. And it’s beautiful'." I identified with her post from a visible difference perspective. By someone saying they don't see colour they're saying they don't see your identity. They're not wanting to associate you with belonging to the other category that they are not comfortable with.

Earlier this year someone I had dinner with asked whether I'd want a cure, even just a treatment, to look more normal I guess? The conversation was uncomfortable; telling of their perceptions of a life lived looking different. They went on to say that by changing my appearance, it would be so much easier for me - fewer questions, comments and stares. I'd be being kinder on myself, they said. Their rationale, while not considering the pain aspect of Ichthyosis, was partly compassionate, and partly because they admitted not being able to cope looking like me. "I'd do myself in", were their exact words to me.

This conversation was full of beliefs and personal insecurities being pushed onto me. My dining partner may as well have been asking "wouldn't it easier to be straight?", or "use a little face whitening cream, it'd be kinder on yourself in this white society?".

Once I picked my jaw up off the floor after realising they'd alluded to the idea that a life like mine isn't worth living, I answered no. I wouldn't take a pill to cure or drastically treat my Ichthyosis. I have written a little about this before - during Ichthyosis Awareness Month and also my rant about pyramid selling - but since that question I have thought about it more deeply.

There's currently no cure for Ichthyosis. There are treatments to lessen the redness, scale, and pain. There have been since I've been alive. Retinoids, topical and oral steroids and infusions are the main ones that my doctors have recommended - treatments that will severely impair the quality of life that I currently have.

I see two sides to a cure: a medical cure and an appearance cure. I don't want either. A medical cure (or treatment, as things stand now) may hold worse side effects than Ichthyosis itself. And I think that an appearance cure is conforming to what society expects of me - the expectation that I would want to look 'normal' and de-identify with a condition that I've become accustomed to and accept. I see it as a bit vain, even.

This isn't to say I don't believe in cures, nor do I think striving for one is a bad thing. I can understand the yearning for a cure, especially if your life has been changed significantly by an acquired disability. You'd want a cure to get your previous life back, to be free of pain, to be ambulant, to live life 'normally'. I have a friend who is undergoing stem cell therapy to one day walk again - the work he puts into his rehab is admirable - and it's working for him.

When I was young, my family and I were in search of a cure. This was tiring - going to various skin specialists and herbal practitioners, the side effects were awful (not being able to go out into the sun, giant pieces of skin peeling off, lots of time off school, fatigue, weight gain, lack of sleep, the prospect of foetal defects...). I also met a number of adults with skin conditions who were also in search of a cure - they were tired too, and their conditions had not improved from the treatments they'd tried. And so of course I wondered why I had to visit another naturopath when these new acquaintances were not cured. In fact, they told me stories of how their skin was a little better, but their lives were impacted significantly, in a negative way.

Living with Ichthyosis has been tough. The pain is the worst. And then people's reactions. Those are two things I could do without. But it's also brought many good people and opportunities into my life, which I am very grateful for. And I'd be weighing up the impact on my capacity to live my life now versus the time spent and side effects of treatments.

Leah Hobson writes about being comfortable with her disability - not wanting to escape it. She mentioned the "faux compliments" people give her, telling her they could almost forget she's disabled. She doesn't want a cure for her blindness either - it has shaped her. There's an idea lurking behind them that everyone with a disability has the need to appear as non-disabled as possible." Leah writes that out of niceness, she's thanked people for their faux compliments. "I've actually thanked people for saying something that made me feel at best unintentionally devalued." She makes no apology for being comfortable of her disability.

Jax Brown also writes about the disempowerment that comes with de-normalising: "I am also routinely disempowered and disabled by a society which views my non-normative body as less than the ideal, the less then the so called normal." But like me she has pride. As Jenny Morris writes in Pride Against Prejudice, physical characteristics of disability or visible difference are seen as "not right and not admirable" and there's an expectation that "we wish to be normal or treated as we were".

But it's ok not to want a cure. and it's ok to be proud of having a visible difference or disability. This is who I am and this is what it is. It's not a life worth doing in, or a face to look past. I'm proud. This is my normal.

 

When empathy hurts. Seeing skin conditions on screen

A friend sent me a link to a documentary called My Skin is Killing Me - it's about two people with severe skin conditions - a young American boy with Epidermolysis Bullosa, and a young Chinese man with Ichthyosis. It showed the medical and social pain of living with these conditions. Payton, the five year old in America, has raw skin that needs layers of bandages (like Nikki, who featured here last week). Even the slightest touch can cause it to shed. Cheng, in China, nicknamed 'Fish Boy' receives extreme intrusiveness in the form of staring and in-his-face ridicule.

(sources: Payton; Cheng)

My friend asked me what I thought of the documentary. I told her I wasn't able to watch it in full. While it showed very severe skin conditions, I didn't find it exploitative or sensationalist - in fact it did not seem like Embarrassing Bodies, nor was it factually incorrect, and so I tried to watch it. This wasn't acting or a fictional script written by someone who's never experienced the conditions before. It was real people sharing their own experiences. If I were to be really critical, while the documentary was aimed at being informative, it probably does serve as a lesson to people who have never experienced such physical and social pain - and it did have a little too much dramatic narration and music to drive home the severity of the skin conditions. I was, however, glad that the documentary showed just how important the skin is as a barrier to infection, and just how sore it can get.

The reason I couldn't watch the documentary in full because of the way I identified with the experiences shown. It was, perhaps selfishly, because my own level of empathy and shared experiences identified with the two people featured in the documentary. I was watching mirrored yet extreme shared experiences. When I saw Payton's fused feet and his skin coming off during dressing time - I winced and felt my skin tingle, knowingly. The pain must be unbearable. And my eyes moistened when Cheng said people often think he's a monster. It must be so incredibly difficult dealing with a mass of people having a fear of you.

My friend who sent me the video said to me "I know you deal with staring on a day to day basis.. but there is footage of people literally walking up to him and staring... and there was no shame in the staring."

I just can't watch this.

As strong and inclusive as I am, seeing hordes of people staring at Cheng would feel like flies swarming at me. I'd want to swat them away. When many people stare at me al at once, it does get overwhelming.

I've got privilege. There's a barrier between me and the TV screen, and I live in a completely different, and rather diverse, open-minded culture. I'm lucky not to be in that much pain all of the time, not to be surrounded by intense social stigma, and to have incredible medical and social support. The empathy I have for others with similar conditions can make realising the enormity of the medical and social challenges really confronting.

Leisa, who is short statured, wrote a wonderfully reflective blog post about being confronted by seeing her disability portrayed on screen:

"I've thought about it a lot over the years and I've come to the conclusion that I find it confronting seeing aspects of my own life played out in front of me - either on the screen or in the pages of a book. In daily life I'm kind of in control of what I see happening around me. I know it all happens - the stares, the comments, the poking of the mate in the ribs and having a laugh, the random pictures and videos taken on a smart phone - but I can somehow block it out to some extent and exist in my own bubble of ignorance.

But to see it up close and personal, highlighted on the screen, or written about in the pages of a book is too much and it hurts...and I'm confronting how I really feel about it...and how I really feel about myself and my own physicality. I watched Peter Dinklage walk and I asked the kids, "Do I walk like that?" They were not able to tell me. "What? He's just walking Mum and so do you." They didn't get it. I suppose this is because they've always been accustomed to having dwarfism around them whereas me, coming from an average statured family, this is all sometimes a "new" experience for me and seeing another image of myself in real human form is still a curiosity for me. Strange, but true."

These two paragraphs from Leisa resonate with me a lot. She wrote her post last month but I am still thinking about her words. There is an element of control I have in blocking out people's reactions and also managing the pain in my every day life, and when I saw pain and cruelty being shown on screen - happening to other people that I don't even know - I remembered the physical and social pain that I've encountered. I wanted their situations to improve so much. Perhaps I took pity on them in the same way I don't want pity directed at me? While I don't want a cure for myself, I do want for a cure to ease the suffering of those severely affected.

There's also the idea of "seeing another image of myself in real human form is still a curiosity for me" - I saw Cheng's face: the cracks, the inside out eyelids and thickened lips - and saw myself. I see myself in so many of my friends in the Ichthyosis community. I am fascinated by our bone structure, face shape, translucent skin, posture, brittle hair and white smiles. And I marvel that we are all one family.

I'm such a believer in sharing stories. They help others share their own stories and come to terms with their own experiences. I learnt that through running the Ichthyosis Awareness Month blog project.

But sometimes stories like my own can cut close to the bone, and I don't cope as well as I imagined I would. It's not that I don't care or acknowledge others' suffering. It's not because I want naivity or pretty packaging of quite messy conditions. It's because I've been there too - and I try not to think about the (relatively similar) difficult times that I've had - I just deal with them as they happen. Sometimes empathy hurts, it becomes sympathy. Sometimes I hurt for those I've never met. And protecting myself emotionally sometimes means making the choice to switch off situations that I identify with, just for a little while.

Do you feel uncomfortable seeing your medical condition shown on the screen? Does it reinforce the reality or severity of the condition for you?

(PS: I'm so excited to be published on BlogHer today! The health editor loved my Halloween scary face post!)

 

Appearance diversity: Living Without Skin - Life with Epidermolysis Bullosa.

I first met Nikki online when she read my blog back in 2011. I think she left me a comment and I contacted her by Facebook. Nikki has a rare, extremely severe skin condition called Epidermolysis Bullosa (EB). Her condition is evidence of just how much skin affects the body's functions - her skin is raw and she's in pain a lot of the time. I can't imagine the pain she's in. The condition can be fatal, and in the time I've known Nikki, she's lost two close friends to EB, and been on the intensive care ward in hospital twice. It must be really hard to lose friends to the same condition you have while you're going through a life threatening experience.

I asked Nikki to tell her story for the appearance diversity series - and she has timed it well because today is the start of EB Awareness Week which runs from 25 - 31 October.

"Skin. The largest organ of the human body. Your body's first line of defence against injury, bacteria and infection from the outside world. The organ that everyone takes for granted...

Well I don't...

My name is Nikki and I'm 27 yrs old. I was born with Epidermolysis Bullosa or EB for short. EB is a genetic skin disorder where by the skin is so fragile that it blisters and tears at the slightest touch. An easy way to imagine it is that our skin is as fragile as a butterfly's wings (which is why EB children are often called Butterfly Children).

EB has been likened to having 2nd degree burns all over the body, except for one difference, while burns eventually heal, EB wounds are constantly coming and going. I have open wounds on most of my body and am therefore wrapped in bandages from head to toe every day of my life.

Daily life with EB can be very painful. Every day I must have my dressings changed which is a long, painful and stressful process to say the least. This involves taking off all the old bandages which can sometimes be stuck, washing the open wounds and then having new dressings applied. This process can take up to 2-4 hours. It is safe to say this is the worst time of day for children and adults with EB. You can always tell when it's getting to 'that time' of day on a person with EB because a little anxious furrow line will appear across their brow. No matter how much of a good day you are having there is always that knowledge in the back of your head that bath time is just around the corner.

(Nikki with Richard Dawkins)

When things are running smoothly I have a 3 monthly EB clinic at the hospital for a full body check for SCC's (Squamous Cell Carcinoma). I am also seen by every medical discipline all in one day as EB can affect every part of the body. I also have monthly renal clinics since having kidney failure.

My subtype of EB can be life threatening as we have about a 50% increased risk of SCC which is a very aggressive skin cancer. There is also the constant risk of infection as well.

While EB may not directly affect other organs, years of constant infections and inflammation can cause damage to other organs such as the kidneys. I have been unlucky enough to have this happen and am now on dialysis. If I have a kidney transplant I will be probably be the first EB person ever to have one which is both scary and....scary. Whether or not I would survive it...that's a whole other question.

Along with the physical pain, comes the emotional pain from constant stares and whispers of strangers. Then there's the innocent but no less hurtful comments from little kids like "Look at that girl!?, Yuck that girl's dirty!" I know they are just curious but well, kids can be cruel sometimes.

Sometimes people can mistakenly believe that EB is contagious but this is definitely not the case. EB is a genetic condition so you can hug me all you want and you won't catch anything! As long as you hug gently though!

I can go out but since I use a wheelchair mobility can be quite an issue. I usually go out with my family and friends to lunch or dinner or have my friends over to my house. During the summer though I tend to stay inside in the air conditioning as I get extremely hot with all my bandages on and cannot control my body temperature.

I studied up till yr 12 and then did 3 years of TAFE studying various Multimedia/IT/Graphic Design courses. After that my health declined and I have not studied any further, however I did teach myself Web Design and HTML and have done a bit of freelance work here and there. Things I enjoy doing to take my mind off EB include having good food with friends, Movies and DVD marathons, cryptic crosswords, building Lego, trying and failing to draw and most recently jigsaws!

I must admit its hard to stay resilient and there are often times I just want to give up. But I can't let that happen so I have to try my best to pick myself up and keep positive.

(Nikki with The Cranberries)

This week is EB awareness week and I want to use this post to educate and bring about awareness of EB to the public. For any parents reading this, teach your kids that if they come across someone with a physical difference like EB that there is nothing to be afraid of and we are just like them.

Currently there is no cure for EB and treatment is mainly based on the provision of very expensive dressings. While these dressings are funded under a very generous scheme from the Government, the EB support charity DEBRA Australia is non-government funded and relies solely on donations from the general public.

Since I was born DEBRA have been a great support to me and the EB community not only providing dressings and other medical equipment, installing air conditioners, but by offering a close knit community of other family members to share stories, tips and advice.

If you would like to help spread awareness and provide dressings and medical equipment for children and adults with EB please follow this link to DEBRA to donate. Your donation WILL make a difference as every little bit counts!"

Read Nikki's blog.

Follow Nikki on Twitter.

Read about Nikki in a Sydney Morning Herald article for Rare Disease Day.

Watch Nikki on ABC's 730.

Keep up to date with DEBRA on Facebook.

For more information about organ donation - so that one day Nikki might get her kidney transplant, visit Donate Life.

 

Things I haven't told you about my Ichthyosis.

I was chatting to Pip Lincolne and Alex Brooks (from Kidspot) at the world's best breakfast buffet (QT hotel on the Gold Coast) and somehow the conversation came to the funny things that happen because of my Ichthyosis. I think it was because I couldn't open a bottle or something - I had to ask someone to do it. Alex and Pip asked me what other funny things happen, I mentioned a few, and they wanted to see a blog posts with the real facts about Ichthyosis. So here are the things I haven't told you (aka the things that make me laugh).

1. I can't really open jars or bottles. I'm too slippery. I do have a jar opener which helps a lot. Sometimes I have great trouble opening a wine bottle and I need to pop down to my neighbours to ask them to open it. Usually I am in my pyjamas. Last month none of then neighbours in my block of flats were home and so I popped across the road, in my pyjamas, to ask a neighbour I'd never met before to open the bottle of wine. "Hi, my name is Carly, I live across the road and I'd really like you to help me open this wine please." It makes for a good introduction.

2. I may give a boy pash rash if he is prone to acne. Years ago, mum asked why the boy I'd been kissing's face had so much of my cream on it. He also broke out in acne. We were 18, ok.

3. My finger prints don't work. I had a difficult time scanning my finger prints at LAX (and an equally as difficult time maintaining patience after a long haul flight, being questioned by the Customs officer and my fingerprints not working on the scanner. "Just scan my retinas", I suggested.) I also have trouble with the biometric thumb drive that I use in my day job. I needed to get it changed to a password lock rather than a thumb print lock. I think it's because the skin peels off. Other people with Ichthyosis have said they also have trouble with finger print scans. And don't even get me started on the bomb squad at LAX.

4. Skin renewal leads to a breast lift. My skin renews very fast - while this sounds a little gross, it forms big patches over my body through the day and night, and the can get a little uncomfortable until I wash it off in the shower. Sometimes, when I take my bra off at the end of the day, my boobs are just a little perkier - they're being supported by that extra layer of skin. Ha!

5. You can tell when I get embarrassed, get a fright or tell a lie. I go white. The colour drains from my face - it's really obvious that I'm embarrassed, frightened or lying. One time when I worked at the department store, there was a thief, and I was asked - over the phone - to keep an eye on him in my department until the police came. A customer asked me if I was ok, he could see I'd gone white - and while I said yes, my face said otherwise. "Is there a thief in the store?", he asked. "No", I told him, but my face screamed yes!

6. I have little to no body hair. There's a tiny amount of hair on my legs - like less than half a centimetre - and when I was 13 and not supposed to be reading Dolly Magazine, I stole a new razor out of my Dad's collection in the bathroom and shaved this tiny bit off. It didn't hurt me, but there was really no need. And there's no body hair anywhere else. This is money saving and painless and I have avoided a beautician looking at my vagina. My friends have tried to explain what happens during a Brazilian wax, and I cant even. Related: I don't ever need a spray tan. I would really like some eyelashes though. Eyelashes are my dream body part.

7. Sleep heals. And pales my skin. I was quite sore recently and had the day off my day job to get some rest. Sleep really does help. My body felt far less sore (the throbbing had subsided) after a three hour sleep, and my face was very clear, paler even. Here's an image of my face that you'll rarely see. Bed head! (Note: there is an Instagram filter on that photo but it was the one that best matched the colour of my skin in the daylight own that day.)

There's always a funny side to this condition. And some positives too! Rachel and Jennifer over at Confetti Skin also wrote about the nice things about Ichthyosis recently.

What strange/funny/interesting things happen to your body because of your chronic illness or disability?

Do you have any superhero skills because of your chronic illness or disability?

 

A letter to little ones born with Ichthyosis or a visible difference. A letter to little Me.

 

Dear all the little ones born with Ichthyosis or a visible difference, and dear little Me:

I want you to know that it will be ok. Life will be ok. Wonderful even.

There's a long journey ahead of you, with your daily care regime, specialist appointments and therapy. It will be hard - people will stare, say mean things and exclude you. I hope the children you grow up with are a little more aware and tolerant of diversity compared to when I was at school.

As you get a little older, it will get a lot easier. You find your tribe. It might be at school, or it might be in after school sports or a club. Or it might take a little more time - like when you get a part time job after school or start college. You'll find friends who will love you for your entire being. The way you look won't matter to them, but they'll also be so considerate of it. When you're in the trenches, they'll be by your side, just like your family.

Your family will always have your back. Sometimes it will be hard for them to see you in pain - medically and emotionally - but that's because they love you. They'll be the ones to see the real you - how much skin you shed, how much cream you get on every single thing you touch, and praise you like you've just won a gold medal at the Olympics when you reach every milestone. They'll love and fight for you.

The love that you're surrounded with is so powerful. Take that love and show others the same. If you see someone who hasn't got many friends or looks a little different, bring them into your life.

Work hard at school and then at college, if that's what you choose to do after school. Sometimes we feel the need to prove ourselves when we look different. Don't put too much pressure on yourself - stress might make your skin sore.

You can be anything you want to be. I wanted to be a writer and speaker, and now I am. My ichthyosis hasn't stopped me, in fact, it's got me places. Looking different will get you noticed.

Try not to compare yourself to others too much. You're who you are - an amazing person human being with so much to offer the world - and they are who they are. You may take a little more time to do things - and that's ok. The gold medal will be waiting for you. Sometimes it will he hard not being able to do things that same as others are doing - like going out in the heat, wearing sleeveless dresses and playing a lot of sports (those are the things I couldn't do - you may be able to do them!). Try modifying some of these activities - like going to play outside when the sun goes down, wear layers, and choosing a sport that doesn't hurt your skin too much.

My top two tips for daily care are: eat a good diet with plenty of fresh fruit, vegetables and protein. Ichthyosis means our bodies need lots of nutrients to grow new skin. I've also found that using sulfate-free shampoos and bath products are gentler on the skin and make my hair grow better.

Have a laugh at yourself. There are lots of funny moments having Ichthyosis. And seeing the funny side can help you through the dark days.

You don't have to explain the way you look to everyone who asks. It's none of their business. Just because you're used to being asked, doesn't mean you're going to be ok with being asked. You have the right to educate people on your own terms.

But when you do explain yourself, be polite (unless they aren't, and

even so, be polite because it will make them feel worse!). Explain your needs to those who need to know and will help you. Your teachers and your future employers. It makes life a little easier for everyone.

Medical technology is advancing all the time. You may be asked to be involved in treatment trials or new creams. While actively seeking a cure hasn't been something that has interested or fulfilled me, I encourage you to try new things that may make your life a little easier. But don't push yourself too much - sometimes seeking a cure can tire you out and compromise the great life you're already living.

Join a support group, like FIRST or ChIPS. Go on camps. No one will get you like others with similar conditions get you. And find a mentor that you can look up to and who can guide you. They'll benefit from this relationship as much as you will.

When you are upset, talk to someone. Tell your parents or your family, a teacher or adult friend you trust. Write your feelings down, or draw them in a picture. If things get really bad for you, talk to a professional counsellor. Don't keep your sad or angry feelings inside. You don't have to be alone.

There's beauty in difference. You're beautiful inside and out. Be proud of who you are. Look the world in the eye and smile.

Carly

This post was originally published on Blessed By Brenna for Celebrate Visual Difference Month.

I did a similar post a while ago, on wanting to travel back to 1985 - 1999, if you're interested.

 

Exercise. I am titanium.

Sometimes I tell the world something to keep myself accountable, or to help my goals happen. I've done this in two forms this past week - things are happening and I feel great! It's also helping my steps to positive life change.

I wrote last week that I had been to the gym for the first time in years. (And that post was republished on Mamamia - thanks Jam!). I wasn't sure how long I'd stick it out, or whether I even should write this post as it's only been a week. I felt so unsure of whether I'd stick excercise out that I bought that cheapest sports bra, telling the sales assistant that I only wanted to spend $20 because I was unsure of my level of commitment to exercise. But I've done it - I've exceeded my own expectations - and others' too. My Mum told me she thinks it's funny, Dad said I've "been exercising like mad" and my previous manager who's known me for eight years had to sit down when I told her. My friends are giving me a lot of encouragement to keep going. Someone suggested I might like to run a half marathon in the future. I laughed and laughed, telling her I'm just focused on surviving the next hundred metres.

I knew I had to start exercising. The doctor told me I should, and I saw myself in a photo recently and wanted to look leaner. So I did. I started off at the gym doing exercise that I thought I could manage. A bit of brisk walking on an incline, gentle cycling, 10 sit ups. I went to a Body Balance class (which I did a few years back, back when I was first blogging). Admittedly I couldn't stop thinking of food during that class.

Somewhere between feeling hesitant about starting because of the pain exercise might cause me, and the smile I broke into when I found myself running on the treadmill, I realised I could do a lot more. My body's a lot stronger than I think it is. And I also realised, I can fit it into my day - 30 to 45 minutes is a good investment in myself, and not hard to make time for.

Since last Thursday night I've been to the gym six times. As this blog post clicks over to published, I'm at the gym. I've done lots of walking and cycling - I've moved 16 kilometres this past week. I've done a total of 250 sit-ups and a few dozen arm weights. I've stretched my body with some yoga and Pilates poses (and one of my proudest moments was being able to clip my hair up into a neat twist while sitting in a pose!). I've pushed myself from walking to running - first walking more than I could run, then equal parts, and then running more than I walked. First I ran 500 metres, then 600, and then 1000 metres. One kilometre! Without stopping or getting out of breath. It felt so good. I've heard about endorphins and now I've felt them.

I don't worry how I look - or about what anyone else in the gym is doing (except that lady who doesn't wipe ANY of the equipment she's used - yuck!), I just focus my eyes straight ahead, looking at the metres clicking over. I don't count calories burnt. I pace myself with songs (P!nk, Eskimo Joe and Darren Hayes' side project We Are Smug have been on high rotation on my iPod), and hundred metre intervals. Just another song. Just another 100 metres. I find myself smiling a lot when I hit these little milestones. I can do more than I thought.

I have been going to the gym in the morning - I have a system worked out that is best for my skin. Get up at 6.00 am, wash face and dry bits of skin, comb hair and tie it back (it's surprisingly lengthy now!) and get dressed for gym. While many people with Ichthyosis have trouble staying cool when exercising (because we don't sweat properly), I have trouble staying warm (and flexible). My skin gets so dry when exercising. My skin is like powder inside my clothes. So I wear long leggings (7/8 ones are full length on me too!), a tank top over a tight long sleeved tee, and a light warm jacket for the majority of my exercise time. When I get home, I have a shower (the best shower I've ever felt), put my cream on, and go back to a warm bed (with heater or electric blanket on) for half an hour. I eat a high protein breakfast - this week has been a slice of frittata packed with veggies, plus a small serve of wild rice, pumpkin and kale. I still fit my social media time in before my day job - I do this in bed - and I am well rested, moisturised and warm.

I feel SO energised when I set off for my day job, and throughout the day too. The endorphins make me buzz. I feel a lot happier than I have been. And I'm sleeping well too. The other night I slept from 8.00 pm until 6.00 am, and then had another sleep for an hour!

I feel that my mind does not relax most of the time. I'm always on the go - reading my phone and a newspaper at the same time, thinking of three things at once, writing several things on the go, eating and watching TV or reading. But for that half an hour at the gym, on the treadmill, I am focused on my whole body. Every breath, every step. I just focus on my next step, the way my body is moving and the way I am breathing. It's wonderful.

Even though it's been a short time, I feel like my posture has improved, my tummy is less jubbly, I feel strong and disciplined. I'm eating more (good food, and not being tempted by naughty snacks), and my skin is feeling (and looking) good. That picture above - that's after one hour and 20 minutes of exercise. Radiant.

I'm stronger than I thought, I can work harder that I thought, and this is less painful than I feared (though on Tuesday my body was so, so sore all over, except for my skin!). It's a new kind of pain, a beneficial one - and for once, I know the reason for it. I am titanium. We all are.

Maybe I'll keep writing about exercise here, if only to keep me accountable. I'm so glad I've started, again. I can't wait to keep going.

-

I've done a heap of guest posts recently:

A big thanks to Rachael from mogantosh who invited me for an interview on her blog this week - she called me an interesting person! I particularly liked writing the five random things bit.

Also thanks to Karyn from Click By Click Social Media for interviewing me about social media last week. I love writing about my love for social media.

I've also guest posted on a couple of Ichthyosis-related sites recently: DeDe's blog and the Foundation for Ichthyosis and Related Skin Types (this was a fun one to do!).

While not a sponsored post, but a commissioned one, I wrote about body image on Mamamia last month.

And finally, I wrote a post on the new Australian health resource site Health Engine.

Also also, thanks to Maxabella for listing my post as one of her favourite reads of the week in her Maxabella Loves weekend linky (one of MY favourite reads of the week!).

Go show those sites some love.

♥

 

Fundraising update: Wrap Tina With Love.

Overnight the fundraising effort for Tina topped $1000! Our target was $300.

This generosity and kindness has blown me away. So many people have made donations that will go a long way, and so many people have shared Tina's story and link to her donation page.

Thank you for raising funds and awareness. These funds will make an incredible difference to Tina, and I know she will feel loved by the wonderful words and gestures of support.

In the next few days I will write to Tina to ask her exactly what she needs from this money, to ensure she is comfortable.

The treatment (both medically and socially) I have relieved in Australia for my Ichthyosis has been exemplary, and I only wish it was the same around the world. Tina has had a difficult life suffering from Ichthyosis in India, and this fundraiser is the least I can do to make her life a little easier. DeDe has articulated the need to help others less fortunate than ourselves so well - read her blog here.

You can donate to Tina at My Cause.

Thank you all.

 

Walking Alongside Someone With A Visible Difference

It seems the more people I meet, and the more friends I make, the more I am reminded that people do treat me both normally and differently. Almost all of the new people who come into my life comment on how much they notice the staring. I never realised staring is that prominent until people remind me.

Tash, a friend I met through blogging, once said to me that she often forgets why people stare at us when we go out together. I am so used to being stared at and commented on that I forget what it must be like for my friends. Of course, I don't feel like my appearance is a burden on them, but I imagine the stares we receive must be just as tiring for them as it is for me. Camille has said that since her lung transplant (which means she no longer carries an oxygen tank with her), she's noticed a lot more stares when we go out together, because she no longer gets stared at alone.

James Partridge, CEO of and author of Changing Faces (the charity and book of the same name), wrote about how when people with visible differences are in the company of people with 'normal' looking faces, it can put strangers at ease during first time encounters - it shows that we are accepted by society. Partridge also wrote "being in a crowd with normal faced friends will almost certainly protect you from abuse and assure your integrity; the very fact of being with a normal-looking person will give you credibility." Furthermore, Partridge writes about implied slurs - people worrying their status of attractiveness could slip by you being in their presence. Partridge uses the example "You aren't pretty enough to be seen among us"; and adds "Nothing may be said, but the looks tell it all." Lifelong experience of having a visible difference has taught me how to read looks and hesitant behaviour from strangers (and sometimes people I know). I am not being paranoid, or thinking the worst of people - I just know these looks. There have been occasions where people have hinted they don't want me in their photo. And I'm certain that a reason for relationships not getting off the ground is that some boys have been embarrassed to be seen with me and not sure how to handle strangers' reactions.

My friends can also see reasons for me to be frustrated with ignorance, hurtful comments and discrimination, and how sometimes I can't keep on being polite. Recently I had dinner and a long, long chat with Kath, a friend who is missing part of two diagonal limbs. She is incredibly smart and funny, and very comfortable and confident about her disability. We were chatting about disability, and how it is just so tiring explaining and defending the way we look, and how we prefer to educate people on our own terms. She said that she is happy to stand in front of a lecture hall or write an article, but she doesnt want to educate people in her every day life just walking down to the shops. Which is the way I feel. I believe it's ok to only want to educate people on our own terms. When the taxi driver thing blew up in July, the things that annoyed me the most were that people expected me to educate everyone I meet - that I should be ok with answering every question that comes my way because I experience this all the time; and that I should also be polite in all my encounters. And for those who know me, and experience what I do by being a friend, can see that sometimes that's just not possible.

Tash has written her perspective of having a friend with a visible difference - it's one of the nicest things anyone has written for and about me.

"Carly and I have been good friends for over a year now, sharing laughs, going to new and different restaurants around Melbourne, attending movies and talks, and even travelling to Canberra together for the Human Brochure weekend. We have bonded over blogging, social media, and disability and other social justice issues we are both passionate about.

When the spotlight hit Carly amid the treatment she coped from a taxi driver a couple of months ago, and the positive and negative responses she got from highlighting this treatment, I was reminded how people see her and treat her differently. Because I often forget – she’s Carly to me! A vibrant, fun and funny friend, who is interested in many of the things I am.

I forget when we walk down a street together, or walk into a crowded restaurant, and people stare. Blatantly! I never remember why….I’m always so self conscious when it happens - “do I have my skirt tucked into my undies?” or “Do I have bird poo in my hair that I didn’t notice??” Oh no, I forgot, my friend is red and shiny….

This realisation, which also occurs at times when I read comments and tweets directed at her from the broader community, reminds me about how tiring it must be for her to be nice and pleasant in the face of such stares, comments and treatment by strangers, and how amazing it is that she does not react as most people would automatically react in such a situation. Given the volume of comments, intrusions and stares, she seems super human to me to withstand the Chinese water torture that is the constant drip drip drip of abuse and horrendously thoughtless comments. How lucky so many people think they are, to be in a position to judge someone else, because of their appearance.

I have also had a couple of different friends of mine talk to me about Carly and her story, and ask after her as you might after someone you know is in the hospital or someone going through some horrible time. It stops me in my thoughts, and makes me wonder if she may have been in an accident I didn’t know about, and thus the voice of concern. But then I always just mention that Carly is just living her life, just like everyone else – maybe I am too flippant, but I don’t see her as any different, in all seriousness! She’s working, socialising, chipping away at goals and dreams, writing, raising awareness for the things important to her, and things that matter and that should matter to all of us.

I have been told that because of my working history in disability and mental health, and my varied roles as a Social Worker, that my views are different to most people. That the average person doesn’t have the experience with people with disabilities that I do, and so it’s an unusual perspective. But I disagree.

You don’t need experience with difference to treat people as you would want to be treated. With dignity and respect. You don’t need a degree in disability to have empathy. You don’t need to work in the industry to have gained a glimpse into the experience, and recognise that people are people, regardless of each person’s range of abilities and challenges.

Am I wrong?

I wonder about people who are rude or horrible to Carly. Do they really not know anyone with a physical or intellectual or mental health difference? Really? The stats about our population would suggest otherwise. And so then I am even more baffled by people’s treatment of others.

I am endlessly in awe of Carly’s patience and resilience in standing up for herself, and other people with a visible difference. But she is still Carly to me! I will always take the piss out of her for her different music tastes and her complete ignorance about sports, just as I would anyone else. I will challenge her on things I don’t agree with, just as I would with any other friend. And I will banter and laugh along with her at the range of things we come across every day. Because surely we are all the same, in the end."

You can read Tash's blog, and follow her on Twitter and Facebook.

 

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Ichthyosis Awareness: Tina's story - "The college discouraged me from being a doctor, stating that I being abnormal will not be able to do it. "

I promised to continue to share stories about personal journeys with Ichthyosis on my blog even though Ichthyosis Awareness Month is over. My blog is open to anyone affected by Ichthyosis to share their story - please contact me if you want to publish your story here.

Today Tina shares her story. She has Lamellar Ichthyosis and lives in India. When I received her story, I cried. She and her mother have been through so many struggles in her life, and the difficulties she's had with people's reactions, medical care and costs have made me feel extremely lucky for the healthcare we are entitled to in Australia, as well as a rather high level of equality tolerance of disability here compared to what Tina has experienced in India. That Tina has had her ambition and right to education stifled because of stigma saddens me so much.

I also wish there was some sort of partnership between the Australian (and specialist Western) hospitals and hospitals in countries such as India to offer education and support to doctors who aren't very informed about conditions like Ichthyosis.

I am very grateful for the online community that has afforded Tina some support after all these years. Finally she can feel a part of a community where people understand her condition.

Meet Tina, and keep a tissue handy. I thank Tina for being so courageous to share her story here, and I wish her and her amazing mother the very best. It's Tina's birthday today - happy birthday Tina!

EDIT: 24 September: Tina's mother passed away this week. I have set up a donation page to raise finds for a cooling vest and creams for her. Visit My Causes to donate. Here's hoping we can help ease the burden for Tina.

"I am Christina Raj, 37 years old from India. I was born a collodion caby. My Mother, a gynaecologist, took utmost care of me as a single parent. My father left my mom as I was born with a skin defect.

Mom had a son who was born 2 years earlier to me with Lamellar Icthyosis; The doctors who attended to her told her that she gave birth to a weird looking baby. They were not aware about the colloidal baby in those times in my place. My bother was kept in isolation in the hospital but after 5 days he developed pneumonia as he was exposed to cold and died. My mom was informed about his condition only after he passed away. My mom had to bear the taunts from her elder sibling that she gave birth to a monster. I was born 2 years later.

When I was born as a collodion baby, My mom instantly guessed that I was born with a genetic disorder. She was prepared this time and fought with the hospital authorities that I will not be kept in isolation but with her. She had no job and no support and was all struggling with her meager savings to take care of the hospital expenses as I was in a critical condition. I was swathed in bandages all over as I had a sore look and the blisters were real bad due to skin tightening. She said that even the corners of my mouth had to be cut to feed me as the skin was tight across. The eyelids were inverted and the hospital folks told that I was born without eyeballs. My mom had to gently pull the upper eye lid after a week. My mother as treated as an outcast , she was blamed that she gave birth to a child who was a monster look like coz of her sins, she was never a part of any functions or family celebrations and was always alone.

At the age of 5 all children started to go to school but I could not as the schools never wanted to give admission to a child who was terrible to look at, I don’t remember anyone carry me as a child, or speak kindly. I did not have friends as the mothers used to tell their children to keep away from my as I had a terrible disease and they would get affected. I had lots of problems as the skin used to scale all over from scalp on to my shoulders and arms and I had to hear those unsightly remarks My only friends were the stray cats and dogs and pigeon that I rescued when they were injured. I took solace in these animals, and as I grew up books and music and church was my entertainment. I used to dread going out because of the stares and the rude remarks. I was always and still considered an outcast by some. There are people who will not touch anything that I touch. They will not eat when I offer and will not like to offer food to me. Parents do not like me to hold their babies. In fact many used to say I have leprosy. I have friends a few now who are very supportive.

As the years went on, I became more and angrier at people’s reactions and became more shy and distant. I would hide because I knew I was different. Now I decided that every time someone stared, I would smile and wave and at times I would tell them if they folks at home did not teach them manners and that it was rude to stare.

Lamellar Icthyosis is unheard of in my part of the country and the dermatologists were not helpful at all. They are not aware of my condition and they had advised my mom to use Liquid paraffin or Vaseline after bath. This was a messy affair which made my clothes, my skin look so greasy and oily. Mom had a tough time with getting my clothes laundered. In summer the paraffin/white petroleum jelly used to increase my woes by adding to the body heating up and heat intolerance. Cooling vests are unheard of in my place. I remember when I used to have final exams that were held only in summer here was torturous for me. I had to carry a bottle of water and pour it all over me to keep me cool and prevent me from fainting due to heat stroke. Needless to say the kind of stares and explanations I had to go through was another ordeal. I have severe dry eyes that used to water constantly but now after I started taking Almonds, Acetretin and constant care by using Glycerin with a little white petroleum jelly has made my life a little better. I used to apply only vaseline for almost 34 yrs. When I met few people from ISG , they told me abot glycerine mixed with vaseline. I started using this and VOILA... It helped me 40%. My skin does not crack and bleed that much now.

I have one problem that has surfaced recently where my body swells twice the normal in a day soon after waking up because of overheating due to any physical activity, such as a basic one like brisk walking also. The doctors here are clueless as to why my body swells, I see my body bloating the moment I start eat or drink anything. Even a glass of water tends to swell my body.

I am often made fun of when I walk slowly. I have terrible problem walking with deep fissures on the heels and I tread cautiously and they are very painful and often bleed. I use my finger tips to type while working and people ridicule me even for this.

I wanted to become a doctor as my mother, but I could not as I have to go through the labs as an intern. The college discouraged me stating that I being abnormal will not be able to do it. I now work in a company. I always have to compete with the normal and people still tell that I am not normal so its difficult. I do not get any tax benefits and the tax deductions are huge. I have tried getting at least tax exemption, but Indian government says that my condition does not come under disability category. I am the only earning person and my 3/4 salary goes up in buying creams, vaseline, band aids, Acetretin, antibiotics, pain killers. The trip to the doctors is another money sponger. Every time i go to a different doctor, he is clueless about Ichthyosis. They write a battery of tests all over. I have to spend 2 hrs explaining about my condition in educating them further. This really leaves me frustrated.

 

My mother was my personal physician. She now is bed ridden as she was diagnosed with Vascular Dementia. I have to take care of her medical expenses as well now. My mom is 75 and retired. My mom has been diagnosed with Vascular Dementia and now she is almost in a vegetative state in bed, lying in the same position since 6 months. I already am the sole earning member in my house and in addition to my medical expenses that I spend on the creams, soaps, antibiotics, ointments, other medicines and the regular blood tests which the doctors write, I now have to take care of my Mom’s medical care. I do not have any kind of medical support. I could not admit my mom in a hospital as it will be expensive for me. I do not have any savings from my Mom as she even though being a Gynaecologist did mission work. My mom worked in a mission hospital on a meagre salary. She said she wanted to do something for the poor who cannot afford medical care. She worked in remote places, she was very kind and when some poor patients who traveled long distance for medical treatment but had no money for food, she gave food to them. She never could see any person go hungry. She always said “God will provide for us”, but we will have to share and help people. Now, when I asks the doctors to check on her they talk all commercial. My mom is almost brain dead; she has been lying in the supine position for last 6 months. I feed her water and liquid supplement with the help of a syringe. She has developed bed sores all over behind and it’s so painful that she groans in pain.

I put on adult diapers for her everyday in the morning after a through clean up with lots of antiseptic soap, followed by application of antibiotic cream so that the bed sores heal soon. The challenge is when one heals other surfaces. She has lost her co-ordination of movement of limbs and her arms are crossed over on her chest following a blood clot in the brain, she cries when I try to slowly release her hands. I will take care of her till her last breath. She has done so much for me and I owe it to her.

I am emotionally, mentally and physically worn out with my own challenges and now, I am sandwiched between, work, my mom and taking care of house."

For Ichthyosis and appearance diversity resources, click here.

 

Not well. Fandom.

I'm not well. Everything has collided and now I have sorer-than-usual skin. The pain is hard to describe - it's throbbing and tiring, and wears at my emotional armour. I'll be ok soon - I always am. This month has definitely shown that stressful situations (and even excitement) can play havoc with the body's balance.

Yesterday I took myself to the hospital to get some antibiotics, a doctors certificate and just to have a chat to a professional, really. While I don't feel sad, I do feel overwhelmed by a lot of things, worried even, and I just needed to know that what I feel is valid and may be contributing to this period of soreness. I have today off work and plan on resting up over the weekend. Now, in addition to the prescription, I can work on resting my mind a little. I will try (right after that deadline I enjoy a cup of green tea and a quality magazine).

I am forever grateful to Australia's public hospital system. We are so lucky to get free taxpayer funded clinics, treatment and hospitalisation. While I don't much like the wait time, I acknowledge the wait time is necessary, and at the end of the wait time, I'm going to see a knowledgable, caring and friendly doctor or nurse who understands what I need to get and stay well.

I went to the dermatology clinic as a walk in patient, rather than having an appointment booked months in advance, and was seen to within half an hour. That beats sitting in emergency waiting for a dermatologist for five hours. (A skin infection never seems to be regarded as a true emergency...) After the dermatology clinic I was referred to the immunology clinic, where shit just got serious.

The immunology clinic appointment was a follow up to the trip to emergency last week. We talked about what happened when I ate seafood - that this was my first reaction after eating it my whole life. The dermatologists have always been concerned about food allergies and I've been lucky to go for so long with only having allergies to latex, pollen and codeine. So this potential allergy didn't really come as a surprise. I was prescribed an EpiPen, practiced how to use the trainer EpiPen, and given some forms for a blood test to test for seafood allergies. We also talked about possibly boosting my immune system with a blood product called Intragram (like Instagram, but not an app and there's no pretty filters. Actually it's not like Instagram at all. It's a transfusion in the arm.), and vaccines for chickenpox and herpes. Next time I visit the hospital I'll have that blood test and then see the immunologist again to discuss the allergy situation. Until then, I'll just avoid eating seafood. What's a foodie to do?! I'll be envious of all those seafood dinners on Instagram...

Two happier things:

Darren Hayes replied to my tweet!

Darren uses social media to do great things - speaking up about human rights injustices, especially around homophobia and discriminatory behaviour. I love that he uses his celebrity for positive influence. And I love that he won't remain silent despite receiving criticism. And nor will I. (Also, did you see he called me beautiful?! Did you see?!)

My Dad was in town for the Liverpool v Melbourne Victory match this week. I was SO excited that he could see the game - he hasn't seen his team play for 36 years.

That's him in Cape Town in 1977.

He was able to meet his friends from the UK - who he met at Liverpool matches back in the UK - while in Melbourne - he hadn't seen them for all those years either.

I saw this on the news and got a bit teary at the thought that Dad was in that crowd, singing You'll Never Walk Alone. Australia's his home now and it is wonderful he could experience that fandom again here.

I grew up with a very passionate Liverpool fan father. He still is - up at all hours watching the match, checking the LFC news on the Internet. When I was little, well before the Internet, and before we had SBS TV in our regional city even, he'd tune into the BBC sports show on the shortwave radio to keep up with the scores. There was a time he came to Melbourne with me for a hospital appointment and we had to change hotels because the one we'd booked into wasn't showing the Liverpool match!

I haven't ever watched a full game, but the chants are all so familiar to me. I knew all the words of You'll Never Walk Alone from a very early age, like it was a nursery rhyme.

Mum sent me that photo the other day - Dad's fandom was passed down to me - not in a sporty way but definitely through my passion for singer-songwriters.

There's something special about being a fan. It's the anticipation of their arrival. It's the passion of seeing your team or band or actor do what they do best. It's the camaraderie, the chanting, the cheering. It's that look you get from other fans - the feeling of sharing the same excitement. It's that intimate moment when your idol looks at you in the eye or sings you that song. It's knowing that your passion has a place in your heart for life. It's the most alive you'll ever feel.

That's it from me today. I'm resting. Probably sleeping as this post goes live.

Do you love fandom as much as I do?

Are your parents passionate fans and has their fandom been passed down to you?

Did you go to the football?

Has your favourite celebrity tweeted you?

Have you got an EpiPen? Does it hurt?

Are you following me on Facebook?