Sunday, 19 February 2017

Sunday Stories | Josie's Cystic Fibrosis Story

Sunday stories is a series on my blog where every week a different person talks about their condition (physical, mental etc.), shares their story and raise awareness. For the past 5 years I've used my blog as a space where I could do just that but I wanted to extend things even further to allow others to talk and raise awareness of their conditions. I'm really excited to introduce everyone to you! Today the lovely Josie is sharing her story and journey with Cystic Fibrosis, I'll hand things over to her, I really think you'll enjoy learning more about what she has been through recently.

Can you tell us a bit about your condition and how you were diagnosed?

I was born with cystic fibrosis (CF), which is a life shortening genetic disease that affects multiple organs but primarily the lungs and I was diagnosed at age 2 after constant chest infections and struggling to digest food. Our original GP dismissed my mum's concerns as being 'a paranoid mother' and I only got a diagnosis after she switched doctors!

How does your condition affect you on daily basis?

I was lucky enough to receive a double lung transplant in July 2016 after CF had damaged my lungs so badly they were failing on me. Prior to transplant I was doing hours of physio a day and countless nebulisers and tablets to try and clear my chest and be able to breathe and I spent long periods of time in hospital. I struggled to do the simplest of tasks such as wash my hair or walk up the stairs. Since receiving my new lungs I'm able to do all these things with ease, plus more! For the first time in my life I'm as 'normal' as I'm ever going to know and the future is looking bright. However as wonderful as it is transplant is not a cure, it comes with many complications and I still have to take medication daily. I'm not sure how much time I'll get with my new lungs but that just makes me more determined to enjoy every day and live life to the full!

Do you have any tips for someone who is newly diagnosed?

I would tell someone who is newly diagnosed to have hope! The prognosis for people with cystic fibrosis gets better every year as new treatments become available which is so exciting. That being said, it's really important to look after yourself as well as you can so don't skip treatments or exercise even though I know it's SO time consuming and dull.

What is one thing you would like people to remember about your condition?

One thing people should remember about cystic fibrosis is that often people with it don't want sympathy but for people to be understanding and take into consideration the limits that living with CF can bring. And please don't mention the cough - we quite aware of it, thank you! 

You can follow Josie on Twitter, Instagram and she also has her own blog, go have a read! You can get support and find more information about CF on the Cystic Fibrosis Trust website.

Friday, 10 February 2017

That Lame Company #BoxOfLame

Yes, Christmas was months ago and yes, this is post is very late and yes, you can't buy this box anymore but, it's full of so many awesome things that can be bought individually so I still thought it was worth doing a review! If you aren't familiar with That Lame Company then I really suggest taking a peek at their website, they're an online shop that sell everything from gorgeous prints to notebooks and of course the famous Box Of Lame bundles.

The Box Of Lame boxes are something that until Christmas I hadn't tried as they sell out so quickly! This time around I set an alarm at the release time, ready and waiting with my card details to snap one up and I was so happy when I did. I'm a big stationery fan and I'd just gotten a new desk at the time so I was hoping to get some motivating prints to put on the wall too. The box did not disappoint and whilst you can't buy the box as a whole now you can buy a lot of the products individually so everything that I can link will be linked!

First up there were a wide range of prints in the box, just what I wanted! There were 9 A5 prints inside, 8 motivational prints and a 'Bloggers do it better' print, perfect for me! As I said above it was motivating prints that I really wanted to have above my desk so I can't wait to arrange these on the wall somehow, I've always loved the idea of having a wall of prints, photos and art. Then the other two prints are A5, a gold foil one saying 'let the adventures begin' and a red foil one saying 'sparkle, shine, shimmer & glow.' Unfortunately you can't get either of these on the website but you can make your own customisable foil print if either of the quotes take your fancy!

Next up is some stationery, my favourite! Inside there was a super cute cactus to do list pad with space to plan for 2 days, such a good idea I think as I'm forever moving tasks to the next day! There were also 2 sheets of thick and good quality paper to write down my new years resolutions and things I want to do more of, less of and things to try more and things to conquer. Unfortunately this isn't available on the website but I thought it was such a good idea! Finally there was also a weekly budgeting notepad planner, I love to be organised, especially when it comes to money so I've gotten a lot of use out of this.

Then we move on to the more quirky and cute items including a gorgeous copper wood candle holder! My boyfriend is a big candle fan so he's been eyeing this up but it's sitting proudly on my desk, a really nice addition. There were also 2 things that I used as tree decorations over Christmas, a gold sprayed pinecone and a slim cut of wood with the word 'Yule' on, they really did make great decorations and the pinecone doesn't have to be exclusively used at Christmas either! 

Next up are some edible treats! There was a little bag of hot chocolate with marshmallows in that looked like a reindeer, a cute little festive touch and I'm a big fan of hot chocolate so that got a big tick from me! Then I saw something that I've wanted to try for a long while, a sachet of Peanut Hottie! It's a peanut butter flavoured hot drink and I'm a huge fan of peanut butter so I was so happy that I had the chance to finally try it and it didn't disappoint. Definitely considering getting a full size tub of it! There were also some rainbow drops inside a cute little Sweet Treats bag that was provided by Liva Little Bakery, she makes the cutest bags that are great for wedding favours and invites! There were also a few little sachets on tea inside, sadly I'm not a tea drinker but I might give them a try.

Finally, some nice little extras including some wax melts from Emily Makes Boutique, a yankee candle and a cute little reindeer! There were also some paperchains inside but I got so excited that I wanted to put them up straight away, forgetting to photograph them! Overall I really love the box and it meant I got some gorgeous prints and I tried some other products that I probably wouldn't have chosen myself! 

Monday, 6 February 2017

Marfan Syndrome | My Story Pt.1

This month is Marfan Syndrome Awareness Month and I've been busy for weeks preparing for it but whilst I was brainstorming I realised that I had never actually told my full Marfan story on here. You've heard bits and pieces about my recent experiences with surgery, chronic pain and disability but I've never actually told my story from the beginning. Since it's awareness month this is probably the best time to do it! I was going to just do one post but turns out my story is quite long so I've had to split it in half, still though you might want to grab a cuppa and some biscuits for this post, it's going to be a long one.

For those of you who have never read a post about Marfan on my blog before here's just a little about the condition, but I'd also recommend reading my information page about it.

Marfan Syndrome is a rare genetic connective tissue disorder that can affect the whole body, everything from the heart to the joints. The connective tissues in Marfan are too stretchy and these can lead to a whole host of problems, including life threatening heart abnormalities. Some of the signs and symptoms of the condition include being tall and slim with long arms, legs and fingers, having hypermobile joints, scoliosis, aortic aneurysms, skeletal & breastbone deformities and eye problems such as lens dislocation and early glaucoma and cataracts.

I was diagnosed with Marfan Syndrome as a baby but my Mum says that she was pretty sure that I had it before I was even born due to seeing my long arms and legs on ultrasound scans. She knew she had Marfan because she had inherited it from her Father who unfortunately passed away when she was just 7 years old, he died from an aortic dissection which is a problem associated with Marfan Syndrome. Her brother also had the condition but again he passed away from aortic dissection when he was young as well.

My Grandad holding my Mum and my Uncle

'Joint hypermobility and pains became part of my life.'

When I was born my Mum's suspicions came true as it was clear that I definitely showed some of the signs and symptoms and an ultrasound scan of my heart when I was a toddler confirmed the diagnosis since my aorta was a little too big for my age and size. As I grew up into a seemingly energetic child more symptoms started popping up, joint hypermobility and pains became part of my daily life, I could deal with that though. But, I struggled to deal with the bullying at school. Marfan makes me quite slim, especially my arms and legs, and kids saw that before I did. The comments of 'you look anorexic' began and I tried and tried to explain that I had a rare condition but they didn't listen. Needing days off school for hospital appointments didn't make that side of things any better either and but it finally stopped when my health declined and became more serious.

In the above photos you can see my Marfan features including long limbs and scoliosis (curved spine)

'I was booked in for spinal fusion surgery where they would use metal rods and screws to straighten my spine.'

When I was a young teenager I was diagnosed with Scoliosis, this is the sideways curvature of the spine, at first my curve was only 27 degrees which was mild and manageable. It was monitored with regular x-rays but suddenly when I was 15 and starting my second GCSE year my back pain got considerably worse. I was booked in for spinal fusion surgery where they would use metal rods and screws to straighten my spine. My surgery date was just after my GCSEs had finished so I could have the surgery and be recovered enough to start my A Levels in September, that didn't go quite to plan though. I went into hospital the night before and everything went forward as it should, having blood taken etc. However, when I woke in the morning things went downhill. At first we were told that my surgery would be delayed due to my surgeon having a personal incident to deal with, I was meant to be first on the list and it was around midday by the time we were being told this. Hours went by and as far as we were aware the surgery would be going ahead, just a little later than expected. Then a messenger arrived to tell me that the surgery was cancelled because the anaesthetists were concerned about my heart problems. The heart problems that they were informed about at my pre-op assessment, problems that they said weren't an issue and they were happy to proceed. Suddenly they were speaking like they had never even heard of my heart problems before though and requested that I see my cardiologist before we even set another date. I was only 15 at the time, in tons of pain, extremely hungry after not eating for about 18 hours and all I wanted was the surgery I'd came for. Tears followed,  a lot of tears but there was nothing I could do and I knew that it was unlikely I'd get my surgery before school started again.

I was given a new surgery date for the start of December which meant that I would need to take at least about 6 weeks off school to recover, not ideal but I was ready to try and get through it all. This time round things went to plan and I was taken down to surgery at about 1pm and was in recovery at about 7pm, heading to the High Dependency Unit soon after. I wrote a diary style post all about the week I spent in hospital that goes into detail about standing up for the first time, walking again etc. Unfortunately that week in hospital didn't go as smooth as we expected though as on Day 7 I started having problems. I woke up during the night with excruciating pains in my right leg, I had never experienced pain like it and I was crying my eyes out. I saw the physio about it and they iced my leg and gave me some exercises to do, assuming that it was probably a soft tissue problem, unrelated to the surgery basically. The pain was worse when sitting and standing so my recovery went backwards, I was certain that the pain was nerve related but my surgeon didn't agree at the time.

'I woke up during the night with excruciating pains in my right leg.'

The pain continued and my recovery paused completely since I was struggling to even sit up long enough to eat. I didn't return to school after 6 weeks and my school were pretty useless actually, not even sending me work home. It wasn't until my 6 month follow up that my surgeon started believing that my pain might be a bigger issue and I finally had some scans. A CT scan revealed that a screw was sitting on a nerve, nerve pain as I had predicted, and I was put on the waiting list to have the screw replaced and re-positioned. I was happy that the issue was going to be solved but I also hadn't prepared myself that I might need further surgery, as far as I was aware all I had to do was have this big surgery and then all would be fine. I had the second surgery in September, nearly a year after the first surgery, and thankfully it was a success. It was a smaller surgery but it was still tough, I wrote a post all about it at one month post op and I even mention having problems with my hips in that post, little did I know what was just around the corner.

That's it for this post, look out for part two which will go up next week!
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