My Blogging Besties: Guest posting about Juvenile Arthritis Research

It's nearly 6 years since we started this blog. I had no idea back then just how much blogging and the blogging world would impact on our lives. But I did get a sense of how special it was to connect with people who you may never have otherwise come across and to find a special bond of friendship with them.

Two of the blogging friends I had back then - whom I have never met face to face and yet feel I know better than many other friends - whose stories have particularly resonated with me - have so kindly offered to host a guest post about the Juvenile Arthritis Research project which Richard started with the aim of finding a cure for Juvenile Arthritis.

So I am incredibly grateful to these two blogging 'besties' - Mich at Mummy from the Heart and Anne at Raisie Bay for helping to spread the word about Juvenile Idiopathic Arthritis and about the JAR project.

So please do hop on over to their blogs to have a read...not only of the guest post but about all the things that each of them writes about.

Mich has always written so honestly and humbly about real issues and things that we could all do with knowing more about...whether it's raising awareness of charities and good causes, discussing health issues openly, talking about family life and sharing her faith, I am always inspired and encouraged by everything I read on her blog.

http://www.mummyfromtheheart.com/2018/07/juvenile-arthritis-research-project.html

Anne knows only too well what it is like living with an illness which others know little about. What she has done over the years in raising awareness of health issues affecting her and her family whilst going through the challenges that each day brings, is nothing short of miraculous. She is an incredibly strong, wise and inspirational lady whose words always resonate with me.

https://www.raisiebay.com/2018/07/juvenile-arthritis-research-a-guest-post.html

Thank you Mich and Anne for hosting our guest post this week. Here's to many more years of blogging friendship and I hope one day to meet you face to face to say thank you in person!

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And I’ll be doing whatever snow does in summer...Aquabeads Frozen Playset Review

It may be hot, hot, hot outside. In fact it feels like the hottest summer I can remember for years. But we've been trying to keep cool as we hide indoors from the heat with the Aquabeads Frozen Playset that Miss T has been sent to review.

Thrilled to receive an Aquabeads Frozen Playset to review

Unboxing the parcel!

We've raved about just how much we love Aquabeads sets and playsets so much in the past that I feel like I'm starting to sound like a broken record - but in summary we love...

• Having creative crafting fun without all the mess - Did you know that as well as the templates that come with each set, you can download a whole host of additional templates from the Aquabeads website (or of course go totally freestyle and create your own designs).
• The innovations we've seen in the different Aquabeads sets and playsets (like the scraper tool in the Despicable Me Minions playset and the new-style sprayer bottle we've seen introduced recently).
• The playsets are perfect for storing your beads when not in use to keep them dry in the bead palette because the design table clips securely on top as a cover. 
• Brilliant for developing fine motor skills - Some of the sets come with bead pens and some don't but either way little fingers get good at picking up those beads and popping them in place. 

We've finally seemed to work out the difference between the Aquabeads sets and the Aquabeads playsets. It seems the sets are the smaller sets containing beads, templates, a layout tray and water squirter. Whilst the playsets contain and bead palette (to sort and store your beads in), a design table to clip onto the bead palette as a lid when not in use and to put your design table on at other times, some playsets do contain a bead pen whilst others don't. The bead pens are available to purchase separately and it is well worth having one if you are an Aquabeads fan. 

For some of the playsets (like the Star Wars one we previously reviewed here), the design table and layout tray are integrated as one.

On the back of each box, it states very clearly what is included so you know exactly what you are getting.

The new style sprayer bottles are brilliant. They give a much lighter even spray of water meaning far less mishaps when spraying the beads. We've found it means that the designs come off the design table far more easily without leaving a residue behind. The beads look nice and shiny too!

Miss T had great fun making Elsa from Frozen. The templates included in this playset are Elsa, Anna, Olaf, and some snowflake/ice palace designs.

Here she is in a little video working hard on her Elsa design:


She soon topped up her bead palette with the rest of the beads that were included and got started on the Anna design...

As so many of the components are interchangeable, she was able to simply use the design table layout tray from her very first Aquabeads starter set whilst Elsa was drying on the design table from this playset.

And after Anna is finished, I'm sure she will soon be onto Olaf.

We've thoroughly enjoyed this playset so far and we've got plenty of play value left to go. You can purchase the Aquabeads Frozen Playset here.

Proud to be Aquabeaders:

Some of our previous Aquabeads reviews:
Cars Character Set Review

Star Wars Playset Review

Finding Dory Playset Review

Toy Story Character Set

Despicable Me Minions Playset



Disclosure: As official Aquabeaders, we were sent the Frozen Playset for the purposes of review. All opinions are our own.

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Keeping it real with ASD and JIA

Gone are the days where my blog is my positive little space, where I try to share mainly the good news. The reality of our lives is that there are days when I feel totally heartbroken. 

Saturday was one of those days. Miss T has enough to contend with battling with her JIA and the weekends are especially tough.  We've moved her injection day to Saturday as we didn't want it to spoil her whole weekend. It used to be Friday evening, but then the nausea would often hit on Saturday morning so by switching it to a Saturday afternoon at least she can still get to her drama class on Saturday mornings. 

But the nausea does still hit her - more often that not lately. And it is heartbreaking to see her take herself off with her sickpot and deal with it herself on her own without making any fuss at all. This was her on Saturday and after weeks and weeks of telling people that 'Miss T is doing fine' and quietly hoping that things will improve I finally took to instagram to show what the reality of weekends is like for kids with JIA... 

The reality of weekends with #jia Something a lot of kids with #juvenilearthritis will relate to is the side effects of the medication. Doctors and nurses encourage mtx injection day to be Friday or Saturday so that the nausea and sickness doesn't affect school life but that means it impacts on weekends instead. 😢 I wish I could take it away from her. She's my brave and amazing #jiaWarrior. #jiasucks #letsfindacureforjia #juvenilearthritisresearch #jarproject #juvenilearthritisresearchproject please hurry and find a cure @_jarproject

A post shared by Rebecca Beesley (@rebeccabeesley) on Jun 23, 2018 at 11:02am PDT

Sometimes it is a bit of stomach bile and we see her shudder as she brings it up, sometimes it is just a feeling of nausea and thankfully nothing actually comes up, and sometimes it is full on vomiting. 

We haven't yet figured out why sometimes it is worse than other times - it doesn't seem to matter what time she eats or whether she eats before or after her injection. We do notice it is worse if we have a car journey the following day as it seems to cause travel sickness. Sadly she doesn't react well to taking any anti-sickness medication and that can actually make her more sick - We've tried phenergan, stemetil and even odansetron. She hates the taste of taking them and she does seem to vomit more on the occasions where we have tried giving these meds. 

So back to Saturday, not only did she have her usual sickness struggles to contend with but J had one of his big ASD meltdowns - this seems to have become the norm at weekends and it is tough on all the family.

Miss T took herself off and came back with this note which brought tears to my eyes... 

"When Josh gets angry it's like a storm and the waves crash together. They go up and down. Sometimes I get scared. When Josh gets angry I just want to go upstairs. I don't know what to do."

And I find myself heartbroken and lost for words for how to help her. And how to help him. And I don't know what to do either.

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5 month update - Younger Hip replacement surgery after JIA

At the end of the week (23rd June to be precise) my new hip joint will be 5 months old. As I didn't feel the need to do updates beyond week 6 / week 7 back in March, it seems that life returned to enough normality by then. 

After the Easter holidays and once Miss T was back from her physio rehab at GOSH, I felt up to returning to my volunteering duties at girls brigade and at Miss T's school so I remember that feeling very much like a milestone. 

My GP referred me for hydrotherapy recently which consisted of 6 sessions over a 3 week period in May in an attempt to increase range of movement. 

If I'm being perfectly honest, I do feel disappointed that the range of movement with my new hip is not anywhere near what I hoped it would be. And whilst the intense night time pain has gone, there is still a generalised stiffness in the hip area especially after periods of sitting in one position. I had always imagined that was due to the actual damaged bone but it seems that everything surrounding the joint can seize up too. 

Sadly my back pain is also still there - that was one of my main motivations for having the joint replaced and for a short time I had thought it had worked - possibly being masked by the initial pain relief medication I was on and then being at home more during recovery meant I didn't 'over do' things with my back- which is one of the triggers for the more severe pain in conjunction with a morning stiffness kind of pain that happens daily regardless. I'm still hopeful for more improvement as the doctor and physio said that it can be a full year before knowing how successful the surgery has been. 

Standing for long periods or movements to strengthen the correct muscles (which I can feel are not yet as they should be) can cause the weird clunking in the joint. I'm hoping that as those muscles that haven't been used correctly for 30 years start to strengthen properly that the clunking will reduce. 

The regret of having had the surgery has now totally gone as those horrendous sleepless nights and difficult early days are well and truly in the past. I realise now that I didn't have any real choice about the surgery as the pain had got so bad when it wasn't being controlled with medication (both prescribed and alternative remedies). 

And I actually feel proud of myself for getting through the worst of that time. I wasn't mentally or emotionally prepared for what my body went through and the fact that I have got through it, I'm sure has made me stronger as a person. 

It's also amazing how many of us there are out there with our bionic hips. In recent months I've bumped into people on train journeys who have had hip replacements, in the online world who are also 'younger' hip replacement patients and have been a huge inspiration to me, and even in real life I met a young lady in her twenties who had her hip replacement when she was just 10 years old! 

I'm conscious of doing everything I can for there to be as successful an outcome as there can be with my hip so I am remaining dedicated to doing my own physio exercises and stretches throughout the week and have been added to the waiting list to attend a few more sessions at the hydrotherapy pool to build on the exercises that I had learnt. My physiotherapist has updated the exercises I do at home to really target the most-affected glute muscle as well as showing me some new stretches. So in many ways although I'm 5 months on and over the worst part of the journey, the hard work and commitment still continues on a daily basis. I'm inspired by seeing Miss T remain committed to her daily physio regime and so I know I need to do my exercises too however much I feel like giving it a miss at times. 

Standing strong together as #JIAWarriors

I'm always a bit self-conscious of sharing photos of my butt yet at the same time all too aware of keeping it real with sharing my #hipreplacement journey and the road to #hipreplacementrecovery . With the 5 month milestone of my hip coming up on 23rd June, I wanted to keep track of how things are going. Blogpost coming very soon and here is how the scar is looking at the moment. To me it still looks quite purpley/pink so I think it will continue to fade more over time.

A post shared by Rebecca Beesley (@rebeccabeesley) on Jun 21, 2018 at 2:44am PDT

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What they see versus what we see - My #JiaWarrior

They see the smiles of a happy fun loving girl full of joy in her heart. 

We see the tears from the pain that keeps you awake at night.

They see hopping and skipping and dancing.

We see the morning stiffness and pain that can leave you unable to walk at times.

They hear laughter as you play with your friends.

We hear the screams of terror on injection day.

They see a child looking healthy and well.

We see the sickness that comes after the injections at the weekend. 

They don't worry too much about kids with minor coughs or colds.

Our hearts fill with dread knowing you could end up in hospital. 

They can't understand how an illness that affects your joints could also cause blindness.

We need to be aware that it can.

They enjoy Christmas and New year's eve without a care in the world. 

They don't see the phonecalls made in the middle of the night when your temperature is high. 

They think chicken pox is a minor childhood illness.

We know you endured a week in hospital with a drip in your arm and the pain of having the canula changed each time it blocked. 

They don't have to diarise a multitude of medicines to make sure a dose isn't missed.

Our alarms ring throughout the day with reminders of what medication is needed next. 

When they think of bravery they may think of a superhero or movie character. 

For us, you are the bravest person we know. 

Strength is going through what you go through week in week out without any end in sight. 

Courage is knowing it's going to hurt but knowing you have to endure the pain of your injections in the hope of a better tomorrow. 

Tenacity is letting them attempt to get blood a third and fourth time when it hurts like hell and tears are streaming down your face. 

I wish more than anything that you didn't have to be a JIA warrior but you are one and you are an amazing one. 

Keep smiling your beautiful smile precious one - we can't take your pain away but please know that we are in this fight together with you. 

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Flossing my teeth with water! Review of the Hangsun Oral Irrigator Water Flosser HOC510

As I type this, I keep running my tongue around my teeth feeling how clean they feel. It's that 'just-been-to-the-dental-hygienist' clean feeling - which ordinarily only lasts about a day. But for several days now I've been enjoying that feeling. And I haven't been to the dental hygienist for ages.

So how have I managed to get these super-clean teeth?

I've been trying out the Hangsun Oral Irrigator - it is a brilliant water flosser product that comes with 2 'heads' and a travel case too.

When it arrived, I couldn't wait to get started as my dental hygienist has often mentioned how great it would be for me to use this type of product. However, these types of items usually carry a high price tag so I'd never felt it worthwhile to invest in one. The Hangsun one is actually really reasonably priced (and they've kindly given a discount code to readers - see below - making it even better value)

I needed to charge it for 24 hours before first use (although a quicker top-up charge is sufficient for subsequent uses), then it is a case of simply filling the water chamber, and setting which mode you prefer (normal, soft, or pulse) and away you go.

My very first use of this was a little bit disastrous as I'd never used a water flosser before. My only experience of one was at the hygienist where they take control and do the flossing. Without reading the instructions I aimed the flosser at my teeth and turned it on. Water sprayed all over my face and bathroom. Lesson learnt. Always read the instructions!

After reading the instructions I tried again. You need to place the head of the flosser into your mouth and only leave your mouth slightly open to allow the water to dribble out whilst leaning over the sink. It doesn't look glamorous but it definitely works better than my first attempt which ended up spraying my whole face rather than my teeth and gums.

The water tank is easy to fill and empty and it gives around 35 seconds of use. That doesn't sound long and isn't very long as it does seem to empty quickly when in use. But it is long enough to get the job done.

I tried using cold water and if you have sensitive teeth like me that doesn't feel as good as using slightly warm water (and it certainly must be NO hotter than 40C).

I just had to remember to empty any remaining water afterwards and pop it back onto its charging cradle. The charging cradle uses a two-pin plug (great for holidays in countries where this is the norm) but in the UK remember to plug it into an adaptor plug or use a shaver-style two-pin socket for it. We have one already as our electric toothbrushes use the two-pin plug format so it wasn't a problem at all.

The travel case holds two flossing heads (they clip in either side) and it fits the main unit in it. The charging cradle will need to be taken separately when travelling. The water flossing unit itself is cordless but relies on the charging cradle which plugs in to the mains supply to recharge.

As someone who regularly feels the need to floss my teeth using regular floss - this product has taken flossing to another level! I find regular flossing with dental floss sometimes leaves bits behind. Whereas this product flushes everything through with the water leaving my mouth feeling fresh and clean. In fact, I don't think my teeth have ever felt so clean.

If you're thinking of getting a water flosser, then this is a great value one to purchase. Hangsun have kindly given the following 20% off discount code for our readers:

I4Q9YUJI

(Save 20% ON WATER FLOSSER when your followers enter code at checkout)

This brings the water flosser down to only £23.99 based on the current price of ￡29.99 and it's available to buy on Amazon here.





Disclosure: We were sent the Hangsun Oral Irrigator for the purpose of review. All opinions are our own. All information correct to the best of our knowledge at the time of publishing. 

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