My Rheumatologist and I

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I have tried a couple of times to sit down and write my end of the month reviews, but each time I’ve hit a wall. Quite simply, I haven’t been thinking much about the goals I set myself at the beginning of the year – I haven’t had time. For the past year now, I’ve been going back and forth with my doctor about some long-term chronic fatigue and pain I’ve been experiencing, and in the past few months, I’ve finally been getting seen, while the symptoms have still been worsening.

Honestly, this has been a part of my life for at least eleven years now, but at the beginning of Summer 2017, it started to feel a bit different. Obviously, my depression and anxiety cause an amount of fatigue, and many years ago I was diagnosed with ‘borderline’ Hypermobility Syndrome after chronic pain in my hips. It took three trips to my GP before they would even begin to consider other causes, referring me to see a rheumatologist, and even then it was a fight. But at least they did finally refer me.

Thanks to Royal Mail’s sterling service, I never actually received my referral letter. It was only when I received a reminder to make my rheumatology appointment that I even knew my doctor had done what they said they would. So when I first saw my rheumatologist in July, I had no idea what the doctor had finally referred me for. It turned out mentioning my dad’s Ankylosing Spondylitis (inflammatory arthritis that primarily affects the lower back) had been what convinced my doctor to refer me, and now they were looking for the same thing in me.

It was something that I had considered before. When my dad was first diagnosed many years ago, I was having lower back pain and headed to the GP then concerned. They sent me for an X-Ray, which came back clear, so just sent me for three sessions of physiotherapy. But they also did a blood test, which confirmed I do carry the HLA-B27 antigen, which is seen in 90% of Ankylosing Spondylitis (AS) sufferers, and other inflammatory diseases. Now, it’s not guaranteed if you have the genes that you’ll get AS, but they certainly think it increases your chances. But I’d been told I was clear, so I went to the doctor thinking ‘It won’t be that!’

‘It won’t be that’ echoed through my head as the doctor looked at all my joints, took some measurements, asked the usual questions. It felt like it was all going pretty well really, except for the crunching in my right knee (the fact it does that all the time doesn’t make it normal, apparently). Then came the time to measure my mobility. I passed chest expansion with flying colours (AS can also affect your ribs, impacting your ability to breathe), and then came the back movements.

Now, thanks to the hypermobile joints I had when I was younger, I could touch my toes pretty easily for quite some time. I could even briefly lay my hands flat on the ground when I bent forward. So I really tried to show off for this doctor. Except I couldn’t. I haven’t been able to touch the floor without bending my knees for a while now. I stretched as far as I could, but the pain in my lower back stopped me from getting very far. Still, the result, I was told, was borderline normal. All good. All that was left was bending to the sides. Easy!

I don’t know if you’ve ever been at a doctor’s appointment where the doctor has turned to you and said ‘Well, that’s not good’, so I’ll let you know how it feels – Not great.

I got redressed and sat back down, waiting for some kind of signal that would hint about what he was writing. After waiting for what felt like forever, he explained the next steps.

Sixteen-week pathway to arthritis diagnosis. Blood tests, X-Ray, MRI Scan, Ultrasound, and then back in four months.

It’s been a long few months since then. I’m still waiting for my final appointment, but results have started trickling through. Letters and referral forms with mention of ‘clinical evidence of osteoarthritis and AS’, but also no evidence in any scans. This limbo is the worst. ‘Healthy’ people underestimate the importance of a diagnosis. When I had my ultrasound done on my hands, looking for damage in my joints, the gentleman conducting the scan turned to me all happy and said ‘Well, good news! I can’t see anything wrong’. I left the room holding back tears because no visible evidence = less difficult to diagnose.

So at the moment, I’m still in the limbo, waiting for my next appointment, hoping they find something and can actually help me. In the meantime, I’ve been accepting this isn’t something that will be easily fixed, and considering what changes I’m going to need to make to stop wearing myself out (for example, the 5KM inflatable fun run I did last weekend was not a good idea, and I’m still suffering physically for that). It’s going to take a little while to work through it, especially with an amount of uncertainty around it all, but I’m sure I can do it. I’m going to be opening up about my journey as it continues, so be sure to come back soon and see how I’m doing.

And for anyone else going through something similar, know that you’re not alone.

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How I Managed to Spend No Money for Seven Days

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As I’m preparing to go into July’s no-spend week, I thought it might be interesting to some people to get a little insight into how I make it work! These weeks, as well as stretching my money a little further, have really opened my eyes about my relationship with money (namely the number of times a week I think about spending it on things I really don’t need).

So, if you’d like to get some similar insights or make similar savings, but don’t know where to start, keep on reading.

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18 in 2018 June Review

July is here, and we are in the middle of The Worst Heatwave here in the UK. I am beyond fed up with it at this point. But I’m trying to push that all aside and get some more progress towards my goals under my belt!
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Full disclosure: This post contains some affiliate links. When you make a purchase on Amazon after using the links in this post, Roxy and I get a little kickback, helping us keep the website running

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18 in 2018 February – April Review

I blinked, and suddenly both February and March have been and gone, and it’s nearly the end of April! Things have been insanely busy over here, with lots going on at work and at home. I’m now in the middle of a week off work and just looking around like ‘when did all this happen?’. I know that I haven’t made as much progress on my goals as I would like, but there’s still time to turn this year around. Read more about what I have managed to do below!
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Roxy’s Romance Tips

If you haven’t noticed, it’s Valentine’s Day! Over on Twitter, Roxy has been sharing her best romance advice, to help you with your relationships – whether it’s Valentine’s Day, your Anniversary, or just because! To make it a little easier for you, she has insisted that I immortalised the advice here on this blog – so without further ado, here we go!

Tip One

If you like someone, just lick them. All over their face is a particularly good spot, especially if they haven’t woken up yet.

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Tip Two

If your other half is on the phone to someone else, show your displeasure by trying to get between them and the phone. Bonus points if you ‘accidentally’ press the end call button. All the attention, back to you.

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Tip Three

Lavish your loved one with gifts. Dirty socks, lost hair ties, even dead rodents really say ‘I love you’.

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Tip Four

Don’t subscribe to this ‘my side of the bed’ nonsense. Live a little. The best place on the bed is always where your co-inhabitor wants to sleep.tenor.gif

Tip Five

Stop worrying about morning breath. Expose your other half to it as much as possible, until they have no choice but to embrace it.giphy (7).gif

Tip Six

Want a manicure, but your subtle hints aren’t working? Dig your claws right into your loved one’s skin. The nail clippers will be out before you know it.

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And that’s it! Roxy hopes these tips help you out with your future better halves – whether they’re feline or human!

A Story and a Grovel

The past year hasn’t been the easiest for my family. In the winter of 2016, I was on the phone with my parents, when they first mentioned something might be wrong with my sister Jessie’s eyesight. My phone signal was bad, and I was on a break at work, so I didn’t really get the full message. I guessed she probably just needed glasses – most of us in my family do. 

It was only a few weeks later when I found out she had a referral to Moorfields Eye Hospital, that I really realised the severity of what was happening. By that time, her identical twin had also been to the optician’s and they had found similar symptoms with her – an unusual area on the back of her eye. It was the first of many appointments at Moorfields, one of the leading providers of eye health services in the UK. Each time, there was a little bit of hope that maybe it might not be that bad after all.  

I remember the day of their final appointment pretty well. This was the one where we would be getting a definitive diagnosis, as well as an idea of how severe it would be. I was meant to be in lectures for my Master’s, but I didn’t feel I could sit through it without panicking. As a distraction, I ended up heading to the cinema to watch ‘Beauty and the Beast’ – but when I left and headed to meet up with them post-appointment, the dread had set in again. 

When I got to their hotel, they gave me the news. They were both given a diagnosis of Stargardt’s Disease – something that we had suspected for some time. 

What is Stargardt’s Disease? 

Stargardt’s Disease is a recessive, genetic disorder, that causes fat to collect on the back of your eye – specifically, the central part of your retina, called the macula. It’s the most common form of inherited, juvenile macular degeneration, and symptoms commonly appear in childhood or during your teenage years but can go unnoticed until later in life. In the beginning, central vision becomes blurry and loses colour, before losing sight in that area completely. It is rare for those with Stargardt’s to become completely blind, but many are left with only peripheral vision. It typically starts slowly, before becoming more rapid and then tapering off in later years. 

 

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This is a picture of the back of Amy’s eye – the dark spot in the middle is a sign of macular degeneration.

 

The news broke our hearts, but obviously, the primary impact was felt by Amy and Jessica. They are both currently in their final year of university, and both previously took time out of their degrees because of poor mental health. The news came just as Amy was returning to her second year at Cambridge University to study Veterinary Science. Jessie was starting her year out from the University of Exeter, where she is studying Animal Behaviour. Both of their plans have had to drastically change following the news – Amy will not be able to practice as a vet (unlike doctors, vets must be able to conduct surgery, which you cannot do if you are visually impaired.) Jessie has always wanted to work with big cats but now has to decide what she can do with impaired vision. She recently had the opportunity to go to Africa with her university, which we made sure she could undertake – because we didn’t know if she’d be able to see them again. 

Doing things because we don’t know if Amy and Jessie will be able to see them again is a common thing at the moment. And not something we ever thought we would have to consider in our family. At the end of the day, we are glad that we are in a position as a family that we can make these things happen – we know some other people aren’t fortunate enough to have these opportunities. We’re a strong family unit, that can support them, and each other, through the uncertainty ahead. 

We will be taking part, as a family, in ‘Eye to Eye’, a sponsored walk raising money for the Moorfields Eye Charity. They support many individuals and families going through a similar experience, as well as funding new research that aims to make blindness a thing of the past. We are proud that as a family we can participate in an event like this to not only raise money for a worthy cause but raise awareness of sight problems like Stargardt’s.  

I understand that money is tight right now – no one has as much of it as they would like! But even a couple of pounds thrown in our direction can make a difference towards our goal of £600. So please, if you can, make a donation. We would really appreciate it – and it would make walking for nearly four hours (with my family) seem worth it! 

You can make a donation by clicking here. 

January 2018 Goals Review

Full disclosure: This post contains an affiliate link to Gousto, a recipe box service here in the UK. When you sign up through this link, you get two boxes for half price – and I get a little kickback! 

Can you believe January is over already? The only silver lining is that it’s nearly February – which means my birthday, and I’m off to see to see Hamilton on the West End! But before that, let’s have a look at how I’ve been getting on with my goals so far!

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Wishlist Wednesday: And a Crafty New Year

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Full disclosure: This post contains some affiliate links. When you make a purchase on Amazon after using the links in this post, Roxy and I get a little kickback, helping us keep the website running.
So, Christmas has been and gone for another year. I hope you got lucky and found everything under your tree that you asked for! Maybe you got a little money for Christmas but you’re not sure what to spend it on? Don’t worry, I’ve got some ideas for the crafters out there to lighten your purse – whether you’re looking for a big budget item or just a little treat! Just read on below.

1. Cricut Explore Air 2 Machine (Affiliate)

I’ve talked about my desire for a Cricut before, and that desire hasn’t waned. If anything, when I spotted the new colours it’s available in, my need for it has grown. I have a huge thing for mint green, so I really had to restrain myself when this beauty popped up in my Black Friday deals.
Beyond appearance, this equipment is a workhorse. Gone are the days when your cutting is restricted to how well you can hand cut or which die-cuts you own. With a Cricut Explore Air 2, your imagination is very much your limit. It’s not just for cutting either – attachments mean you can also get it to draw or write for you. Just think about it – calligraphy style writing without the hand cramp? That’s the dream! The only thing that’s holding me back is that price tag – I feel like I’d need to be doing a lot more papercraft than I currently do, but fingers crossed for the future!

2. Big Shot Plus Starter Kit (Affiliate)

A Big Shot Plus was my first die-cutter, and honestly, I would still be using if it wasn’t so big! When I moved into my tiny studio, the Big Shot went to my sister and I took my Cut’n’Boss. But the Big Shot, in my view, was a much more reliable piece of kit. At most, I would put things through twice to get a clean cut. The system is simple, with pictures on the plates to help if you forget the order. The larger size (compared to the original) means you can cut bigger dies (duh!), but it also copes well with smaller more intricate dies.
The only drawback is that it is hand operated (an electronic version is available), so this needs to be considered for those with bad wrists like me! However, I only found it to be a big problem with high GSM Card. All in all, it’s perfect for a die cutting starter, especially if you go for the starter kit. When I first bought it, I used the starter kit contents to make a series of Easter boxes for my family, which out having to use anything else from my stash.

3.KnitPro Symdonie Rose Interchangeable Needle Set (Affiliate)

This set of circular needles was top of my Christmas list a couple of years ago, and since receiving it I haven’t used anything else (even for non-circular projects!) The needles themselves are a gorgeous mahogany colour, with rose gold-coloured metal for the attachments.  The kit comes with a needle gauge (for when the numbers inevitably rub off) and a range of needles and connecting cables. They are the perfect size to sit in your hands, and I’ve found using circular needles like these for all my knitting helps support the weight on my wrists better, leading to less pain. Like other wooden needles, I’ve found them easy to knit with, not too slippy and not too sticky for most yarns. The ends are sharp and stay sharp.
 There are a couple of things to be aware of before purchasing. The connections may gradually unscrew as you are knitting, but as long as you keep an eye on them and screw them back up as you go, you shouldn’t have many problems. I have also had one needle break at the part where the wood connects to the metal. However, I had no problem purchasing needles to replace it, and it was one that I had used a lot! Overall, I would absolutely recommend these to any knitters out there!
When I first saw gold plated needles recommended for cross stitch, I brushed it off as just silly. How much difference could a bit of gold plating really make?
The answer is a lot. I picked some up on a whim a year ago and haven’t looked back since. It glides through the material, making even the little movement of making a stitch feel seamless. They also feel a lot easier to thread than the standard needles you get.
They also look really fancy.
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Experience it for yourself and pick up a pack today. You honestly won’t regret it.
And that’s it for the last Wishlist Wednesday of 2017! Be sure to check back in 2018 for more recommendations and to find out what else is on my wishlist – this is just the start! And in the meantime, comment below with what’s on your list!