Iktyos Tidningen - Ichthyosis Magazine. Published in another language!

I was recently approached by Maria, a Swedish online friend, to write an article about my blogging journey for a Swedish Ichthyosis magazine. The magazine called Iktyosis Tidningen is a feature of the Swedish Ichthyosis website. It seems the Swedish Ichthyosis community is thriving. I'd love to meet them someday.

I was thrilled when Maria sent me the magazine on Monday night - it is a beautifully presented publication.

Though I cannot understand the Swedish translation, I can tell you I wrote the article about how I blog about Ichthyosis, and the literary, geographical and personal places my blog has taken me.

You can download the full magazine to read here. It's all in Swedish so you will need a translating program to read it.

Thank you for having me, Maria, Helene and all at Iktyos Tidningen. It's certainly very cool to be published in a foreign language!

PS: the photo of me was taken by the lovely Ulyana, more to come on the photoshoot.

 

Red. Weighing it all up

On Tuesday, amongst a million other things, I had a good chat with one of my dermatologists. It was a bit of a debrief, I guess. We didn't talk much about my skin, other than the emotional and social impacts of it. Since hospital, and hospital again, my skin's felt ok. It's the heart and mind stuff that's troubled me. How to cope with stuff and when to take a step back. How to manage expectations of blog readers and people who seek advice from me. And whether the social challenges of ichthyosis should be healed above the medical challenges. We returned to what I wrote about in March - quality of life. So much food for thought.

One of the major things we spoke about was a breakthrough in medication. There's a new drug that has the potential to dramatically reduce the inflammation of my skin. Great! Not as many people staring at me. I can walk down the street in peace.

But. And there's always a but. Administering the medication is quite complex. And the other big side effects are that it would not reduce the dryness and scale, and also make me more susceptible to infections.

So we talked about how I can deal with the redness and the social challenges that come with that. But I can't deal with the pain of infections. It's. Just. Too. Sore.

And I mentioned something I hadn't thought about until recently. For most of my life, I didn't want to be red. Black or white or a skin colour that society is used to. Anything but a skin colour that makes people stare.

But it's now come to this. My redness is my profile. I tell stories, and have the face to go with the stories. People often want to get to know me because of how I look (rather than how it was - people not wanting to get to know me). I am remembered by those that matter. I now have to use my looks to make a positive impact. A bit like the way bikini models use their bodies. And maybe, for maximum impact, I could strip down to my bikini too.

So if I wasn't as red, how would I get messages across? How would I show someone what it's like to look so visibly different? And as a friend said to me, people may get the impression that  I've "had so much work done since I've been on TV". Hah!

Have you ever been given the opportunity to use a medication with such big opportunity costs? And have you eve been thankful for your illness or disability because it gives you a great life?

Carly's guide to top beauty survival products (part 2)

Yesterday I shared the beauty survival products I use in the shower, for my hair and skin. Today I am sharing the products I use when I am sore, and the 'luxury' ones.

The list is a modified challenge set by My Favourite Things.

Note - these products work best for me, and I recommend you seek your doctor's advice before trying them on you or your child.

Soreness

When I am sore I usually have a bath. I use a combination of these three products - all from the supermarket. Olive oil and table salt, or bleach.

I keep my olive oil in a pretty ceramic decanter in the bathroom. I use about a cup each of oil and salt to a bath two thirds full of water.

Bleach baths are not scary. They reduce inflammation and infection, and actually moisturise. I use half a cup of bleach to a bath two thirds full of water. Bleach baths were recommended by my top dermatologist. And he knows his shit. I even splash the water on my face.

When I first had a bleach bath, I did it at my parents' place in case things went wrong and they had to rush me to hospital. Nothing went wrong. It did reduce the inflammation on my face and Dad kept singing Michael Jackson's Black or White. It was funny.

I also soak chux cloths in salt water and use them as face and body compresses when I am sore.

I use these creams (on my body only) when it's sore. Silvazine cream and Diprasone ointment.

Usually these are last resort options - when I am almost dead or in hospital.

Silvazine is a burns treatment. I use this with bandages like a mummy. Like this. (Except never Silvazine on my face.)

Diprasone is used on my body too. Maybe on my face, but I think it's more likely to be Sigmacort.

Both have side effects. Silvazine can be absorbed into the body. I fear I will end up like the guy who turned blue from absorbing silver.

(source)

I probably won't turn blue. It's too expensive for me to stock up, and the PBS does not prescribe a great amount anyway. But turning blue would be exciting for me! Silvazine also dirties clothes.

Diprasone is a cortisone and thins my skin so I can end up with sore patches after a week of use.

Fortunately I don't use these frequently.

There are other creams I've been prescribed but the combination of cost and side effects leave me choosing the ones I really need/can afford.

Luxury items

I guess these are my real beauty products. Luxury items!

I only use Calvin Klein Eternity perfume and Lucas paw paw ointment each day.

I love the subtle smell of Eternity. Sometimes I use Estee Lauder Beyond Paradise or the Body Shop's vanilla oil. I either spray the perfume on my clothes or dot the oil on cotton wool, roll it so the oil is on the inside of the cotton wool and won't touch my skin, and stick it down my bra. 

Paw paw ointment is used on my lips and hands during the day. Vaseline doesn't moisturise my lips like paw paw does. 

The other products are 'sometimes products'. For special occasions.

Body Shop Brazil nut define and no frizz hair cream is brilliant for softness and curl.

Lush American Cream conditioner is good as a leave-in styling product. It creates tight ringlets and smells good. As a real rinse out conditioner, it leaves my hair with the Pantene effect - siliconey and a very scaly scalp. Beware though, if it rains, it may run down your face. I had the experience of a rainy night on Lush-styled hair and it made my face infected :(

I sometimes use L'Occitane shea butter on my lips and hands. It smells of rice pudding, and is so gentle. There used to be shea butter lip tints sold in Australia, and I liked the bright red one. Sadly the store does not stock them anymore.

Speaking of lips, lipstick (or gloss, whatever it is called) and nailpolish is the only true makeup I use. I use lipstick about twice a year. I got some freebies last year and here I am wearing some, on set at No Limits.

I hate removing nailpolish so I usually only wear it on my toes.

It was fun compiling and writing this extensive list.

I hope you found my list interesting and of course, useful. I am particularly keen on hearing back from people with ichthyosis. There is nothing glamourous about my beauty survival regime. It's relatively cheap, but I only wish more of it was listed on the PBS for the Medicare Safety Net. Please remember, these products work best for me, and I recommend you seek your doctor's advice before trying them on you or your child.

Carly's guide to top beauty survival products (part 1)

After my first vanity, beauty and prejudice piece I wrote last week, who would have thought I'd be writing a blog entry devoted to beauty products? And who the hell thought I'd NEED such products?!

 

 (source)

Hold on, keep reading. It's all relevant!


My Favourite Things has set a list challenge that I'd thought would be both fun and informative to do on my blog. I have modified the list to categories that are relevant to my own life.

I don't use any make up or many off the shelf body products. I wanted to share my usual beauty product routine with you though. Or survival product routine as I call it. It may be useful for you if you have sensitive skin or ichthyosis.


Note - these products work best for me, and I recommend you seek your doctor's advice before trying them on you or your child.

Shower

I shower twice a day.

For about 10 minutes.

The morning is laborious: wet hair, leave in shampoo/condition, scrub nails (with gentle soap and nailbrush) wet ears, wash face and ears, wash body, comb scalp, rinse hair.

Night is easier: Wash face, wash body, scrub nails, stand under hot water.

I wash my face with a facecloth and plain water.

I wash my body with simple products. Hamilton Gentle Wash (or QV, whichever is cheaper) and sometimes bath oil (again, sometimes Hamilton or QV).

 

I only use these products on my body, never my face.

I have also used Cetaphil Restoraderm body wash recently, which has been good for the fatter parts of my body but makes things sore in places where the skin easily rubs off (particularly chest and feet). And it's expensive too. But can be used as a shampoo.

If I am sore (with infection) I will use Microshield handwash in the shower, particularly when I am in hospital.

Moisturiser

My moisturising regime is also plain and simple. Cheap. And very greasy.

 

It's good old customised (by the chemist) and prescribed (by the doctor) vaseline. I call it cream.

70 percent soft white paraffin and 30 percent liquid paraffin. In the cooler months the ratio is changed to 60/40 for easier application.

It comes in 500 gram tubs - I get about five kilos every month.

For easy transport in my handbag I use little jars of vaseline brought from the supermarket.

I apply this all over my body after my showers, twice a day, and then when needed.

Everything I touch is greasy. Everything.

Don't give me the 'vaseline is polluting your body' lecture. Particularly when you're smoking.

Sometimes I use Elidel in addition to my cream to reduce the redness on my face before a big event.

I can't use sunscreen so I cover my body up and wear a hat.

I also drink a lot of water to keep my skin hydrated - perhaps three to four litres a day.

Hair

I have been a recent convert to sulphate free shampoos. I used to use 'gentle' ones, or medicated ones. But these irritated my scalp, leaving it itchy, scaly and at worst, hairless. I have finally found shampoos that wash my hair well and are gentle on my scalp.

I generally wash every second day and condition every day - all during my morning shower.

For the past few years I've been alternating between Dermaveen and Alchemy products

I started using Alchemy gentle shampoo and macadamia and wheat conditioner about five years ago, and it was like a miracle - all the scale was easily removed from the front of my scalp.

My dermatologists did advise against using plant based products because specialists can't predict how the ingredients will react with my skin. But Alchemy has been great for me.

Dermaveen shampoo and conditioner is, I guess, a more medicated product. It's quite thick and leaves my hair ringlety. It is also good for my scalp.

Recently I was recommended Modern Organic Products shampoo and conditioner. They are sulphate free.

They wash and condition my hair well - leaving it soft and silky, and my hair styles well when it dries. Pricey though! I spent $53 on these.

Every day I comb the scale out of my hair during and (in more detail) after my shower. It can get messy but has to be done. Once, a former manager pulled some skin from my hair at work. Ooops.

I always towel dry and style with my fingers. Sometimes I will use a hairdryer. A straightener will probably do damage to my hair or worse, catch on fire from my cream.

My form of ichthyosis means my hair breaks off at the scalp. So I try to avoid pinning or tying it, or using harsh styling products. When I was 15, it turned into an undercut, and I had big patches without hair - very bloody and itchy and scaly. Really difficult. It is prone to small patches now, usually caused by comb nicks.

When my scalp is extra scaly, and because I have inherited my Mum's African hair in the form of my Dad's loose curls, I use an occasional treatment of olive oil or Sorbolene through my hair and scalp overnight.

I have two more categories that I will cover tomorrow.

I hope you found my list interesting and of course, useful. I am particularly keen on hearing back from people with ichthyosis.

There is nothing glamourous about my beauty survival regime. It's relatively cheap, but I only wish more of it was listed on the PBS for the Medicare Safety Net. Please remember, these products work best for me, and I recommend you seek your doctor's advice before trying them on you or your child.

A sore day but a good day!

Today my pain had not passed like I predicted it would last night. My legs hurt. My arms hurt. My body hurt. And my face hurt but only a little bit. This was all due to getting cold at the gym. As I said, the pilates movements didn't make me sore. I have no muscular soreness or tiredness. Everything that is sore is my skin. It's burning, agitated, inflamed, panicked, cold, hot, tight. It makes it so difficult to explain to people sometimes.

This morning I had my regular check up with the dermatology team at the Royal Melbourne Hospital. A big shout out to them - they are fantastic! There I have a team of about five regular dermatologists who are there year in, year out, and then registrars that rotate each year. I also have a dermatology geneticist who has provided me with a great insight into my condition. Fortunately for me, the head of the dermatology team is the best in Australia, and I get pretty good attention from him and the rest of the team.

When I have a check up, they rarely 'treat' me unless I am sick and need to be admitted to hospital. Generally they just prescribe me authorities for the creams and tablets I need, ask me how I am coping with life, and get numerous other dermatology student doctors, visiting doctors and specialists from other departments to come to look at me. Sometimes it feels like I am a zoo exhibit with so many onlookers, but these days I am asked whether I want onlookers before I get them. I have said no on occasions when I've not felt well enough to discuss my WHOLE MEDICAL HISTORY (how is telling them about the day I was born going to benefit the present day's appointment? I have asked them!).

Today it was good to go to the hospital feeling sore and sad (because of the soreness) so I could talk it through with the team. It's always good to have some reassurance from someone that they're there if I get too unwell, and of course someone who understands the pain.

Quite often if I see a new GP or registrar in the emergency ward, my skin condition is more of a novelty interest for them, and they focus on that rather the skin issue rather than my sore throat, or in the case of the emergency ward, they may not understand the severity of it, or be shocked by the severity of it! I guess it's so rare that the doctors less experienced in dermatology want to learn as much as they can from me, or put me in the too hard basket.

The dermatology team also focus on the whole of my medical care, and refer me to other specialist departments at the Royal Melbourne such as the eye specialist, ear nose and throat, surgeon and genetic counselors. If I need urgent medical attention they are there for me when I call the hospital. All this care for a public patient is wonderful. I never begrudge paying my Medicare levy or Medicare levy surcharge!

Even though I was really sore today, I left the hospital with a (small) chocolate pastry (the Royal Melbourne Hospital cafeteria ROCKS!) feeling really good about myself. It was really good to have a sounding board. And one of the doctors reiterated how 'amazing' I am to cope with this condition and lead such a full life.

Work was pretty fun too, which meant my soreness didn't worsen. I work with a great group of people and my work is very rewarding and friendly which I love. (I have also found it hard to switch back to the PC keyboard at work since buying my MacBook Pro!)

After work I wanted to rest up and elevate my legs, so didn't feel like cooking. I bought dinner, which is rare for me to get takeaway on a weeknight.

I bought sashimi (I adore raw salmon, not so much cooked salmon) and rare beef from Sushi Sushi, and prepared a very quick salad of blanched cauliflower, asparagus and broccolini, grapes, salad greens, the carrot from the sashimi and cherry tomatoes, with a dressing of lime juice, chili, sesame and sugar (inspired by Faux Fuschia). It was delicious, and very healthy. I loved the tang of the dressing on the salad paired with the sashimi. I didn't rate the rare beef though, and wouldn't recommend it - too bland, even with soy sauce on it.

Here is a photo of my dinner. It may be a bit bright and plastic looking because of the flash?



It was very yummy!