Thursday, January 30, 2014

Juvenile Idiopathic Arthritis

This month I have been asked by a lovely Lady Holly who I met on Twitter to guest post on her blog. 

What I would like to talk about is JIA or Juvenile idiopathic arthritis.

This medical auto immune Disease can be described as:

            Juvenile - means that the arthritis began before the patient was 16 years old.
            Idiopathic means that the cause is unknown.
            Arthritis - means one or more joints are inflamed.

Arthritis is not an old persons disease.  They type of arthritis people get as they are aging is called osteo arthritis this is where the bones are thinning and starting to wear against each other.  There has bee some campaigning through out the world to rename one or the other as the cause of each illness really do not have any links to each other.

The Girl (now aged 10) has suffered from JIA for the past 3 years. 

The Girl (now aged 10) has had JIA for 3 years:  She also has hypermobiliy (which used to be known as double jointed).  It has a great effect on her everyday activities and cause much pain and frustration. Its not a fun illness to have at any age. Constant pain, joint stiffness, tiredness, frustration because you don't understand why you are different, bullying from other children because you can;t walk and then next day you are running around like them. A disease without a cure.

Hospital admissions, daily meds check up with JIA Consultants, eye consultant (looking for a condition that can turn you blind if not caught) daily physio at home, JIA nurses, physios, orthopedic surgeons because the JIA has caused damage in your knee and its looking like joints are growing at different paces. If the slow growth leg does catch up a big op to make the bone longer, drugs that drop your immune system, powerful drugs, chemo drugs all for a 'normal' when you are a child with JIA.

This should not be normal for any child.

Like all JIA patients She has regular physio appointments and exercise that can take 30 to 45 minutes each day.  Try explaining to a 10 year old why they can't go out and play with their friends because they need to do these unpleasant exercises.

It's so heart breaking seeing her in pain.  It's hard to explain to someone that she gets up each morning and is so stiff she can't bend her legs but in order for the stiffness to go she must.  There are tears most of the time.

There are lots of blood tests to be had.  

Then there are constant meds, every day without fail and then treatments under general anesthetics:


JIA can also effect eyes as well as other organs so we have 3 monthly eyes checks at the hospital.

Then there is the tiredness from daily activities.  A day at school can mean an hours sleep when you get home and usually with her friend Squeaky close by:

Help us (The Boy, The Girl & I) to raise awareness and funds in order to find a cure.

We are in the planning stage of a fund raiser a real fun activity which Freya can participate in with little join stress. Proposed date is 25 May (Sunday of Whitson Bank Holiday). It may have to move back until the summer holidays I feel there is going to be some read tape in front of us.

Thank you so much to those who have already donated. I will be setting up a page when we know that we can do what we would like to do (the red tape bit) 

As a sufferer of Rheumatoid Arthritis, I understand the pain and frustration encountered on a daily basis as a result of this incurable disease, A of of people just think arthritis is wear and tear on joints due to old age and don't even realise children can have this illness too.  Rheumatoid arthritis is nothing to do with old age.  It is your own body fighting itself.  Your body thinks your joints are an alien body and goes in to survial mode attaching the joints.

You have done nothing wrong to get it.  You got dealt a different challenge in life.  JIA and RA are invisible diseases, people struggle with this concept of seeing no physical illness and can be so unkind.  The Girl has been at the end of a lot of remarks such as she is making it up or putting it on to get out of doing something she doesn't want to do.  Nobody should have to deal with such behaviour from others.

Lets try together to find a cure and help bring my happy beautiful, smiling, precious girl back to me.

I would really appreciate it if you could spread the word about JIA and RA and if able donate on my just giving page where I am hoping to raise £100 for Arthritis Research UK as part of my 50 by 50 bucket list.

JustGiving - Sponsor me now!

More information about JIA and RA can be found here.

Please share this to help raise awareness.  Thank you for reading.

Arthritis Research UK

Arthritis Research UK

Charity Registration No. 207711
Arthritis Research UK is the charity leading the fight against arthritis. More than 1 in 6 people are affected by arthritis, it is the biggest cause of pain and disability in the UK. We’re working to take the pain away and to help people remain active, doing the things they love.

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Sunday, January 26, 2014

Scrappy Sunday (26 January 2014)

This year I plan on getting on top of my crafting.  I have included some crafting goals for my 50 By 50 but there are a few other things I would like to achieve.  One of these is to do more 12" x 12" scrapping for The Boy and The Girl's yearly albums.  I did complete a  Shimelle class (sorry the title eludes me) some time ago where I went through my albums and looked where the gaps were.  The places were certain stories or events were missing.  I had got The Girl's albums notes done but The Boy's needed to be done.  

Since then we have gone through another year and more gaps are there.  To be honest I did very little 12 x 12 scrapping for 2013 and both of their albums are lacking in pages.  This year I would like to get the 12 x 12 albums up to date as well as working on our family Project Life albums.

I was lucky to have a couple of hours spare last week and managed to get the two LO's completed for The Girl's album's:

Two more pages made for The Girl's 2012 album. Two more photos to be ticked of my 'to scrap' list.

Are you even up to date with your crafting?

Silent Sunday

 Silent Sunday      OneDad3Girls

Saturday, January 25, 2014

A Walk Around Town

It really has rained, rained, rained and rained some more here lately.  However, on Friday there was a little break and a bit of blue could be seen in the sky.  I jumped at the chance to walk to the Doctors and get some fresh air as I was beginning to get cabin fever.  

Here are some photos taken on my trip:

I walked the short way to the Doctors which is across the sea front. The sea and waves are much more calm than when we had the storm a few weeks ago.

Next to the Doctors.

Off down the High Street to the Pharmacy.

Back up the High Street and home the scenic way.

The sheep have been brought down from the higher ground ready for lambing.  There is in fact one teeny tiny lamb hiding in that bunch.  He looks so out of place having been born so early but is certainly thrieving.

And finally over the train track.  Just round the corner is where the track got damaged from the storms.  Workmen are working hard repairing it. 

And just as I walked back through the door.....It started raining agin!!!

Linking up with Fiona for #CountryKids over at Coombe Mill 

Thursday, January 23, 2014

Reasons To Be Cheerful

I have been meaning to take part with this linky for quite a while in order to see the good things in life.  At times I have the tendency to look at the negative a little too much.  I especially do this when life is a struggle and looking at the negatives often makes my mood even less positive.  This needs to change.  This year has been a struggle but I am seeing positives through the grey.  

These include:

1)  The Girl is getting over being ill and has today gone back to school.

2)  The Girl has gone back to school after having 3 days off and I have time to get on with some time sensitive work.

3)  I have managed to have some crafting time this week.  This always cheers me up.

4)  I have had plenty of support from some wonderful people I have met online regarding an issue I am working through.  I had been down about things as they were not improving as quick as I had hoped but I was given support to persevere and see there is light at the end of the tunnel and the end of that tunnel is not that far away.

5)  I treated myself to a new candle.  Something simple yet relaxing when it is lit at night.  I love to watch the flame flickering away.

6)  A friend is driving over 100 miles to take me out to lunch on Friday.  We have been in contact quite often on the phone or net but it has been a while since we met face to face.  I am so grateful for this wonderful gesture.

7)  I am having a pick me up pamper evening tomorrow.  Manicure bits and face masks at the ready.

Wednesday, January 22, 2014

Wednesday Words (22 January 2014)

Sums things up right now....

Media preview

Linking up with Emma over at Crazy With Twins.

Wordless Wednesday

Linking up with Vicky over at Single Mother Ahoy for Wordless Wednesday.

Home Made Pizza

During the Christmas Holidays we had a PJ baking day.  As well as cakes, biscuits and scones we made some pizza and two sweet bread tray bakes, one with apple and almonds, the other with bananas and walnuts.  

We made our dough from scratch using a Jamie Oliver recipe.  For the pizza I used half of the dough.  

We rolled the dough out and then added some tomato puree and a splash of Worcestershire Sauce.

We then added our own toppings.  The Girl picked ham, pepperoni, cheddar and mozzarella with another splash of Worcestershire Sauce.

I left the pepperoni off and added mushrooms.  We cooked them at 220 degrees for 15/20 minutes as we like a deep pan dough.

Served with a green salad but sadly they were eaten up before I could take a photo of the cooked pizza.

Next week I will blog about the sweet breads we made.

Tuesday, January 21, 2014

A Reason To Believe

Yesterday I wrote about my plans for 2014 in working towards my 50 by 50 bucket list. One thing I want to work on this year is losing weight. I know a lot of people want to loose weight to look or feel better but then there are others who need to loose weight for medical reasons.  I am one of those people who fall in to that latter category.  Luckily I am tall which means my BMI, although high, does not put me in the obese range.  But I do need to loose weight to help with medicals conditions.

I am quite sure that a few health issues may improve if I shifted some weight but I am aware that these conditions will always stay with me.  I am lucky to have three conditions, lets call them D, C and RA, that are classed as chronic as in they are long term and have a deliberating effect on daily activities.  It's not something I have discussed on my blog, I have mentioned a few times that I have Rheumatoid Arthritis (RA) which is an auto immune disease. The other two illness are also auto immune diseases too.

I have lived with these for 26 (D) and 20 (C) years and they do impact on my life a lot. They also impact on each other too.  I have only been diagnosed with RA for a couple of years but looking back and having seen how The Girl has been with her JIA, it is clear that those growing pains I had as a child were probably mild JIA.  Then as I got older and I was diagnosed with C the medication, which was actually a RA treatment, masked the symptoms for the next 18 years.  When I came off those drugs because of side effects that had come too much, within days I suddenly couldn't walk.

Double Adjustable Lightweight Elbow Crutches

At the age of 38 I was finally given a reason why I was in so much pain and stiffness. It wasn't upsetting, it was a relief to know it wasn't in my head as my Mother had made me feel all those years ago.  There was a reason why I couldn't just get on with it and stop grizzling. A valid reason why a child should be listened to when they say they are in pain.  A reason why a child should not be belittled. A reason I wanted to tell my Mother.  A reason I wanted to shout loudly at her, but was too late as she had passed away some five years earlier.  A reason why I tend to over react when my own children say they are ill. The reason why they will always be believed when they say something is not right.

I apologise for digressing and bringing my Mother in to this post.  You see five days ago would have been the 7th anniversary of her death and to me the day just passed by like any other day.  It just didn't enter my head.  You see we didn't really get on, she was controlling, very controlling. It's taken a huge amount of counselling to get over how she made me feel, my confidence, my self worth were none existent.  I still have a long way to go but I know I will get there.  I know my One Little Word for 2014 will help me get over how she made me feel but I know that I need to let go of other family members who behaved the same way she did.  It's hard and upsetting knowing that I may never see my Nephew but I need to break the cycle. This behavior ends and my children will never be made to feel like that.

Well, I digressed again.  Last week I talked about liking cake but wanting to loose weight.  Cake is not good for loosing weight. Cake is not good for health issue D either.  It's another cycle that needs to be broken.

Then there is health issue C. The one that probably causes the most health problems with its side effects. Sometimes I'm not sure what is worse, the illness or the side effects of treatments.  When I was pregnant I had to come off some of the medication which I knew was a risk but wanted my little bundles to hold. When I was pregnant with The Girl, 11 years ago, I had back pains, really bad back pains.  My GP, midwives, Consultants all said "you are having a baby, you only just had one and now you are pregnant again, what do you expect". Then came "you've just had a baby, what do you expect".

What I didn't expect was this level of pain.  The Girl was born in July and 3 days before Christmas I collapsed and ended up having surgery.  A routine little op they told me and in a few weeks things would be better. Fast forward 5 years and 9 operations later.  I had been misdiagnosed. It was big complications with health issue C. Problem was when the complication  started, which they think was actually 12 months earlier than the onset of the pain, I was pregnant with The Boy and bits of my insides were not where they should be due to having a baby inside me, hence why the pain was in my back.

The Girl turns 11 this July and problems still exist.  The complication hasn't been fixed and never will.  After 9 operations I have huge amounts of scar tissue and nerve damage. Then there is an open wound, although tiny now, it won't heal. I fully appreciate the encouragement and advice given on this post but jumping up and doing housework with gusto is something that doesn't happen and never will. I can't stand or sit with good posture hence everything else hurts.  The only relief is lying down and you can't live life lying down all the while.  I have to set an example to my children that you must try your best, you must work hard, you persevere and you strive to be the best you can be.

I hint on this blog, Facebook & twitter about health issues but I really don't give the full reality.  The side effects of treatments and complications plus the other health hiccups are not something I am open with on social media.  Who wants to shout out that they are disabled, use crutches, a wheelchair and are the proud owner of 2 granny scooters.  Who wants to say publicly what others have to do for you.  Who wants to list all the meds you take but I will say Morphine is a wonderful thing; it lets me get out of bed each day.

I will leave you now, as I've wittered on too much, with the question as to how do I stay motivated to loose weight?

I am going to take Kate's suggestion and have a mini pamper session this week to perk me up.  Nail varnish will probably be limited to fingers as I am struggling to bend this week and The Girl's attempt at putting on nail varnish is to say at the least a little iffy.  I get a better effect if I empty the bottle from waist height straight on my feet and carpet.

I also want to make time for some crafting this week.

It will be fun to have a bit of me time and do things I enjoy.  As for my reason to believe, it's right here:

Come on Groovy Mums I know you can help.

Linking up with Kate for #GroovyMums                                                     and Lucy at Mother Wife Me for #AlllAboutYou


Monday, January 20, 2014

Plans For 2014

A few weeks ago I eluded a little to what I would like to achieve this year.  When I turned 40 last year I made a list of 50 things I would like to do by the time I reach my 50th birthday.  This year I would like to work on some of these goals and hope by the end of the year I have at least started to put the wheels in motion with a large number of them.

10 months in, I have managed to achieve 1 of these goals and I have scrapped about in the smash book I am going to make about my journey.

I have prepped some of the pages in advance in the hope of speeding up the scrapping of this project.

This year I would like to concentrate on the following goals:

  • 1) Raise £100 For Charity

  • 12) Go On A Spa Weekend
  • 15) Develop Blog
  • 16) Set Up New Business
  • 19) Make A You Tube Craft Video
Grown Up Stuff
   21) Rewrite Will
  •  22) Put House On The Market
  •  23) Sell Current House and Buy A New One

  •   29) Learn Welsh
  •  30) Take A University Class
  •  32) Improve Digi Skills
For The Fun Of It
  •  44) Lose 3 Stone
   45) Renovate Five Pieces Of Furniture
  •  46) Crochet 10 Blankets
  •  47) Complete 10 Project Life Albums 2013 to 2022
  •  48) Knit Socks
  •  50) Make A Quilt

Obviously some of these won't be completed in full this year such as:


  •   29) Learn Welsh
  •  44) Lose 3 Stone
   45) Renovate Five Pieces Of Furniture
  •  46) Crochet 10 Blankets
  •  47) Complete 10 Project Life Albums. 
But I fully intend to make a start on them.  I would like to at least:
  • Lose 1 stone
  • Renovate 1 piece of furniture
  • Crochet 3 blankets, in reality finish 3 blankets I have started.
  • Finish my 2012 and 2013 Project Life albums and have the first 6 months completed of 2014.
There are 21 goals here that I have chosen to concentrate on this year.  At the end of 2014 I will be nearly 2 years in to my time period, therefore, if I can achieve what I would like to this year it will be fantastic.  However, there are some real big goals that I would still like to achieve.  

This year the biggie has to be selling my house in The Midlands and buying a new one here in Wales.  If all I achieve this year is that then I will be really happy.  As much as I like living here we have been in Wales 11 months next week and living in a cramped 2 bed house is really getting to me.  Simply put, its not big enough for us and if we don't move somewhere bigger this year it will begin to give us problems.  I've really noticed the lack of space over the past few months when it has been cold, dark and wet and The Boy and Girl have been inside all the while.  They want to invite friends over but we really lack the space and I am beginning to feel as if they are taking advantage of their friends' parents as they are always there having meals, sleepovers etc and we certainly can't offer sleepovers here at the moment.  I know it will happen but I need this goal to happen this year and soon.

Am I being a little optimistic in trying to achieve all this in one year?

Have you set yourself any goals for 2014?

Friday, January 17, 2014

Knitting Socks

Last year I made a list of 50 things I wanted to do by the time I turn 50.  One of the items on the list was to knit a pair of socks.  

I am not an expert knitter in fact I am a complete beginner.  I learnt to do a knit stitch as a child but it was only less than 18 months ago that I actually learnt to pearl.  The only things I have knitted are a pair of wrist warmers and a couple of hats.

During the past 6 weeks I have purchased/been given a number of balls of sock yarn with the intention of knitting those socks.  

 I've started with some Regia self striping yarn:

If you look closely there is a little mistake in the rib on the right side where the blue and dark beige colours meet.  But I carried on knitting.

But then I noticed a mistake in the blue stripe, no wait, I noticed 2 mistakes.  Here I sit with a sock that has a teeny tiny mistake in the rib which is not really noticeable but 2 larger mistakes that scream out at me.  What do I do?

Leave it.

Try and frog back bearing in mind I am useless at doing that without starting all over again.  Then I have the problem of the stitch marker.  I need to go back about 10 rows.


Use this as a test sock and buy another ball of yarn.  I'm quite sure when I get to turning the heel there will be issues too.

What should I do with this current sock?  

Can you offer any advice?