WORD day 2019 - World yOung Rheumatic Diseases day

Today is the first ever WORD day - a day of awareness for children and young people living with rheumatic diseases (including Juvenile Idiopathic Arthritis which Miss T has suffered from since the age of 2).

One of the things that I've found myself feeling somewhat angry and upset about is that when I was diagnosed with JIA back in 1987 (or Juvenile Chronic Arthritis as it was called back then), the main thing people would say to me when I told them why I was on crutches was "Arthritis? but I thought only old people got arthritis".

It made it a lonely place to be as a 10 year old with such a lack of understanding and awareness in the world around me.

Fast forward to 2015 and Miss T's diagnosis of JIA. I had truly hoped things would be different in the 3 decades that had elapsed since my own diagnosis. But the main statement we heard time and time again in response to hearing of Miss T's JIA...you guessed it..."But I thought only old people got arthritis!"

That is why the introduction of WORD day is so important. It is not only to help all those suffering day in day out with their condition feel a little less lonely and a little more understood but crucially with greater awareness comes quicker diagnosis and treatment, and receiving prompt treatment can make a huge difference in the longer term outcomes for these children.

In my own case, it was over a year until diagnosis and by then the damage was done resulting in me needing a hip replacement operation. We know Miss T was one of the lucky ones with prompt diagnosis and treatment enabling her to live a much fuller childhood than I had. But JIA still throws its curve balls at us, whether it is the sickness and side-effects that her medication causes, the threat of regular childhood illnesses like chicken pox landing her in hospital, or the ongoing mystery foot issue that no-one seems to be able to explain.


So today we celebrate the bravery of these children, we stand with them to show we care, we shout out to the world that children and young people get rheumatic diseases too!

If you want to show your support, join the #WordDay2019 tweet chat between 6pm and 7pm (GMT) TODAY (18th March 2019) @wordday2019 on twitter.

If you want to find out more about Word day have a read of this brilliant blogpost by Simon Stones.

Juvenile Arthritis Research will also be sharing case studies and stories of children with JIA on twitter throughout the day.

This is the age Miss T was when she got arthritis. 2 years old. Children of all ages can get arthritis and rheumatic diseases. Help spread the WORD.

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Chewy oaty banana bars

After making my healthier flapjack recipe, this recipe was supposed to be another variation on healthy flapjacks.

They turned out far more soft and chewy than planned so I don't think I can call them flapjacks really.

 With no refined sugar, they are sweetened with banana and raisins.

 Ingredients:

250g oats
3 bananas (300g when peeled and mashed)
50g coconut oil (melted)
1 tsp vanilla extract
Half a tsp bicarbonate of soda
30g cocoa powder
100g dried fruit soaked in 80ml boiling water

Method:
1. Preheat oven to 180c. Grease and line a baking tin (I used 23cm x 27cm).
2. Mix together the bicarb, cocoa powder and oats.
3. In a separate bowl mash the bananas, add the vanilla extract, coconut oil and the dried fruit which has been soaked for a few minutes in 80ml boiling water (pour it all in including the water).
4. Then mix together the wet and dry ingredients. Press it into the prepared baking tin.
5. Bake in the oven for 25 mins.

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Healthier flapjacks

I love to attempt making healthier versions of my favourite foods. Just over a week ago I got a phonecall at midday from Miss T's school...she'd had a bad fall and injured her ankle quite badly.

When I went to collect her from school during her lunch break she was worried about missing out on dessert...which was flapjacks that day.

We took her piece of flapjack home for her to eat at grandads house that afternoon but it made me realise that I never knew how much she loved flapjack.

I decided to make my own but with a few healthy twists...taking out the refined sugars and replacing butter with coconut oil and rapeseed oil.

Ingredients:

100g coconut oil
400g oats
95g rapeseed oil
80g dessicated coconut
150g raisins, sultanas or dried mixed fruit
100g honey
86g Apple puree

Method:

1) grease and line a baking tray (I used size 27cm x 23cm) and preheat the oven to 180c.
2) In a pan melt together the coconut oil, rapeseed oil, honey and Apple puree. Then add in the oats, dried fruit and dessicated coconut.
3) Mix really well and then press into the baking tray.
4) Bake for 25 minutes at 180c.

When I made this I forgot to add the honey and Apple puree into the oil mixture so I had to add it in after but it still worked out ok.

It made quite a crumbly flapjack so next time I think I'd experiment with more Apple puree, or coconut oil and perhaps without the dessicated coconut because not everyone likes coconut as much as I do.

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Christmas 2018

How are we already in February!!! I was determined to get Christmas 2018 written up before January was out but somehow that didn't happen. Better late than never I suppose! 

As someone who usually hugely dislikes Christmas, I actually enjoyed it this year. Probably because we kept things very low key. Having missed booking a Christmas online grocery slot, I didn't even have to do any Christmas food shopping in advance of Christmas. We just made do with the regular food we had and I'd bought a small turkey crown ages ago to pop in the freezer. My own nutloaf was already cooked and sliced and frozen too all ready for Christmas day.

In the run up to Christmas, Miss T had loved opening the gorgeous little fabric bags on her Evie Michelle advent calendar with a pretty bow in each pocket.

These beautiful bows really were the highlight of our advent in the run up to Christmas! Thank you so much Evie Michelle!!!

D read us the story of "Santa Goes on Strike" - you can read our review here and I can see this becoming an annual tradition to read this book each year.

One of the things I do enjoy about Christmas is making our own family traditions. For example, the kids know that no-one is allowed downstairs on Christmas morning until we've opened stockings upstairs first. So they all pile into our bedroom and open their stockings on Christmas morning. It gives me a few minutes longer in bed too so that's a bonus.

Most years we try to remember to take a family photo of us all. It is quite possibly the only day of the year that we manage to get a photo with us all in it!

We do a bit of present opening in the morning and then more after lunch to spread it out throughout the day.

Daddy cooked amazing yorkshire puds this year...

I like to attempt a homemade dessert when there are no guests to worry about. (Things always go wrong when I try to cook for guests!)

This year Real Handful provided us with the ingredients and recipe for the perfect Christmas dessert. We love what these guys do, their snacking philosophy and you can sense the passion of the family behind these fab snacks. And kindness too - I remember them sending me some get well snacks whilst I was recovering from my hip replacement surgery - How kind is that! 

We actually decided to make two of these desserts - one to share and a mini version too. They are Chocolate dessert bombs made with pannetone, icecream, real handful blood orange burst and chocolate drizzled over them.

Miss T was overwhelmed with some of her Christmas presents - this made us all cry when we saw her cry with happiness.

And then it was all over for another year.

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Guestposting at Britmums

I'm thrilled to have been asked to write another guestpost for Britmums, this time about our decision to home education two of our children.

You can read the guest post here. 

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Banana and blueberry breakfast muffins (gluten-free, no added sugar)

It seems I've REALLY been into banana muffins lately. We've made some with and without sugar recently but I wanted to go one step further and see how they would turn out with gluten-free flour and using coconut oil in place of butter. 

I'm so pleased with how they turned out - they're quick enough to make for breakfast and healthy enough to eat for brekkie too!

 Ingredients:

1 mashed banana
2 tbsp almond milk
1 egg
40g melted coconut oil
140g free from fairy plain flour
1.5 tsp baking powder
0.5 tsp bicarbonate of soda
80g sultanas
55g fresh blueberries (optional)


Method:
1. Preheat oven to 180c. Line a 6 hole muffin tin with muffin cases.

2. In a large bowl mash the banana with a fork, mix in the almond milk and add the egg.

3. Add the flour, baking powder and bicarbonate of soda into the same bowl along with the melted coconut oil.

4. Finally mix in the sultanas and blueberries.  The blueberries are optional - I had a few that needed using up.

5. Spoon into the muffin cases and bake for around 25 minutes at 180c (or until a skewer comes out clean).

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