Hospital Appointments and HRT

Since the last (only) time I wrote about my Turners Syndrome a lot has happened, I still don't know too much in terms of it's effects on me but the check ups and treatments are well underway so I just thought I would go over that here for anyone that may want to know the kind of tests/check up us turners ladies have.

Medication

There are only 2 types of medication that I take currently

• 3 vitamin D supplements in a high strength in the morning. These are due to a deficiency in Vitamin D which has affected my bone health. I was diagnosed with osteopenia meaning I have weak bones but not so weak that they would break with ease just through a fall etc. 
• 3 oestrogen tablets (ethinylestradiol) on a night. This is my hormone replacement therapy which is standard for girls with turners syndrome as well as lots of other women that have issues with their hormone regulation. This currently is purely oestrogen for now until my doctor sees fit to transfer me to the combined pill with progesterone in.

Tests/Screening

As you can imagine, I've been subjected to a lot of prodding and probing in the past year and a bit just to make sure I'm in tip top shape. Some of the tests I have had done are:

• Enumerable blood tests to diagnose any deficiency or abnormality in the blood. As mentioned above the only deficiency right now is Vitamin D however in my last set of tests, my ferritin levels came back as low so my doctor has decided if they are any lower by my next appointment, I will be put onto supplements for that too.  
• A Dexa scan to check my bone density levels - this was the test that discovered my osteopenia.
• An MRI scan for my uterus to see what shape it was in, this came back normal
• A healthy heart test to ensure my heart was working as it should be - this was just an ECG which came back fine
• A cardiac ultrasound - this was just to see what my heart actually looked like and to make sure there were no problems with my aortic valve - weirdly, this was my favourite of all the tests as I got to see my heart on the screen in the same way an expectant parent see's their child both are fascinating to see.

I can't actually think of any other tests I've done but aside from that I have regular check ups at the hospital to discuss my general well-being, plans for parenthood and my extremely terrible food habits (I always get a telling off about that last one)

In general, I'm very happy with my progress since diagnosis both personal and physical, a lot of things have begun to make sense, I joined the UK Turners Syndrome Support Society and often interact with the other TS ladies and parents which is always helpful and full of support where needed. 

Thanks for reading, 

Hayl xo

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My stay at Wynyard Hall

Back in April (I drafted a lot of posts ready to come back!), I went with two of my friends to stay at Wynyard Hall and have some time at their spa. If you've not heard of it, Wynyard Hall is a beautiful country hotel in (would you believe...) Wynyard in Teesside.

So, on arrival, we were greeted at the welcome desk, given our key and taken to our room, we were staying in the Mount Stewart Suite which is one of their junior suites to fit up to 4 people. Our room had a nice view of the front of the grounds as it was just above the entrance to the hall. The room was gorgeous sadly I didn't take any photo's to upload, it had 1 double bed and a double sofa bed too. Also in the room was the standard tea and coffee provisions (complementary) and an array of bathroom goodies to sample too. there was also a tv and dvd player which was handy as we had wanted to watch a film whilst we got ready for the night. I took a handful of DVD's although they did have a their own library that you could loan from should you have wished to do so.

On the night, we decided we would go to a local pub for tea called The Stables. The food was to die for and the portions were HUGE! We got potato skins as a starter and the waiter recommended we get 2 between the 3 of us rather than each get 1 and even then I don't think we ate it all! I then got a trusty Chicken Parmesan 'Parmo' for my main, it came with chips but they were about an inch thick and wide again it's safe to say, I did not finish that! We were all far too stuffed for dessert so we went into the bar for drinks. The atmosphere was lovely and we had a fantastic night (and of course it wouldn't be a trip to any pub without me leaving v. tipsy).

The next morning, we went down for breakfast at around 8am and each got a full english as well as a few bits from the continental spread they had. Once full, we then headed to the spa. None of us really fancied an actual treatment so we just spent our time trying out all of the facilities - the hot tub being the clear winner for us all I believe!

Overall, it was a lovely stay and I'd love to do it all over again

Hayl xo

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Baking With Hayl - Tanya Burr's Lemon Drizzle Loaf

Last year, I bought Tanya Burr's - Tanya Bakes, in an effort to bake more and I'll not lie - it was a while before I put it to good use! My absolute favourite recipe from the book would be the lemon drizzle loaf, it's just so quick and easy to prepare and tastes absolutely amazing! It's a huge hit at the office too, especially with my boss!

For the cake:

• 3 eggs
• 170g self-raising flour
• 170g caster sugar
• 170g butter
• 1 teaspoon baking powder
• zest of 2 lemons*

For the icing:

• 150g icing sugar
• juice of 2 lemons*

*Through trial and error, I've found its a lot better to use 2 smaller sized lemons, I once used 2 larger lemons and there was far too much juice to icing sugar ratio making it slightly too tangy for my liking - if you prefer the tangy taste just do what you think but I definitely prefer using the smaller lemons.

Lets bake!

Pre-heat your oven to 180℃. Mix the eggs, flour, sugar, butter, baking powder and the zest of two lemons into a big mixing bowl. line your baking tin with a bit of butter or use a non-stick baking tin and pour mixture in. Bake for 35-45 minutes - the cooking time depends on the size of the tin and your oven. To check your cake is ready, slide a knife into the centre and if it comes out clean, it is ready to come out of the oven.

Mix together the icing sugar and juice of the two lemons to make the drizzle. Stir it together - it should be quite quite a watery consistency. While your cake is still hot, poke it all over with a skewer or sharp knife and then pour over the drizzle so it can soak in.

Hayl xo

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Guess Who's Back - Back again...

Hiiiyaaa... it's been a while, no? Well it would seem that we have a lot of catching up to do then ey? Since the last post, all I've thought when it comes to blogging is, what is there to follow a post like that? Where do I go from there? The answer, as it would seem, is wherever the hell I want and since I've had such a long break in between what I'd classify as 'proper blogging' as in me having a schedule etc. I thought I really can write anything, if there is ever a time to give my blog a new feel it would be now hence the new theme. 

So now for where am I going with my blog? 

Pretty much as I used to - I'm gonna write what I feel like writing but this time, I'm going to do it better! this means that If I want to write a beauty post about a facemask I'm loving... I'm gunna! If I've been binge watching a show on Netflix and I think you'll love it - I'll let ya know!

I really want to give the whole blog thing a go one more time and if it goes back to square one, I'll pack in (maybe) and just forget about writing all together but for now, I constantly think about how I can come back to the blog and what I can write that will make me happy and what better to make me happy than whatever I want?

Thanks for reading possibly my rambliest post ever! 


Hayl xo

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Why are you so little Hayley?

Before anyone reads any further I would just like to say that in no way do I write this to gain sympathy, there are people that have life way worse who are deserving of sympathy and while it's nice to know people care, I really don't need it, I've had my time and I'm slowly coming to grips with everything. I've been in 2 minds as to whether I should post this at all, I hate when people put their entire lives everywhere for people to see because personally, I don't need everybody else to care as I have all the people I could possibly need. I'm purely intending to raise a little bit of awareness.
Here goes...
Growing up, I'd always been a bit behind the rest in the growth department, you could say a head and shoulders behind.. badum chhh! Until late last year, I'd never had a factual explanation as to why I was short, I used to think it was because I'd been premature or because I have Italian genes on my biological dads side neither were right of course. Another thing that was odd was that I hadn't started my period at all. When all of my friends had and I hadn't I demanded to go to the doctors which my mum refused because (and quite rightly so) I was only 14 and there was still plenty of time, then when I was nearly 16 I went to the doctors to see if they had any answers but they just told me to return when  was 16. I naively thought things would start on their own which they didn't so when I was 17 I went back and had some blood tests and was sent off for an ultrasound which I didn't follow up because I was terrified at the thought of having a physical examination so I just left it. Last year in march time, after a lot of nagging from my mum, I went back to the doctors and was sent back to the hospital for more blood tests and the physical examination I was so terrified about which if anything was just mortifying and had been nothing to worry about what so ever! I then had another blood test which was sent off for karyotyping to look at my chromosomes and whatnot. 
Finally after all of my procrastination, in September, I was diagnosed with Turners Syndrome which is a genetic defect that happens to around 1 in every 2,000 women, there's no known cause and the best was to describe it is like a little hiccup as my genes were forming. There are two types Classic, where an x chromosome is damaged or missing in every cell and Mosaic where the chromosome is missing or damaged in every other cell, I have mosaic which I believe means my case isn't so bad which I imagine is why it took so long to be known as I've only suffered with some of the symptoms and the rest I'll be tested on in the next couple of months. I still don't know the ins and outs too well as I've only had one hospital appointment since my diagnosis however this is what I know up to now. According to the mayo clinic website, these are the known screening stages/symptoms of Turner Syndrome:
Before birth

• Large fluid collection on the back of the neck or other abnormal fluid collections

• Heart abnormalities

• Abnormal kidneys

At birth or during infancy

• Wide or web like neck

• Receding or small lower jaw

• HHigh, narrow roof of the mouth (palate)

• Low-set ears

• Low hairline at the back of the head

• Broad chest 

• Short fingers and toes

• Arms that turn outward at the elbows

• Fingernails and toenails that are narrow and turned upward

• Swelling of the hands and feet, especially at birth

• Slightly smaller than average height at birth

• Delayed growth

In older girls, teens and young women

• No growth spurts at expected times in childhood

• Short stature, with an adult height of about 8 inches (20 centimeters) less than might be expected for a female member of her family

• Learning disabilities, particularly with learning that involves spatial concepts or math, though intelligence is usually normal

• Difficulty in social situations, such as problems understanding other people's emotions or reactions

• Failure to begin sexual changes expected during puberty — due to ovarian failure that may have occurred by birth or gradually during childhood, adolescence or young adulthood

• Sexual development that "stalls" during teenage years

• Early end to menstrual cycles not due to pregnancy

• For most women with Turner syndrome, inability to conceive a child without fertility treatment

I don't believe this list is exhaustive but this is what is known so far. Of course as I've explained, I've only ever suffered with my height and the fact I've not had a period (supposedly, I have a webbed neck too but I think the nurse was chatting rubbish quite frankly) and I'll be screened for any of the others such as heart and liver function in the coming months. Oh and as my height goes, can we just discuss the fact that I am taller than the average girl with turners... that's right I, hayley louisa elliott, who is 4"11... am TALL for a girl with turners syndrome without growth hormone therapy!

When I first read the letter I got in the post, I cried my eyes out, I think I cried for a good hour. I've always thought about my future and it always included me being a mum and although it isn't out of the question, it's going to be so complicated, while spontaneous pregnancy is more likely in mosaic turners syndrome, it's not 100% and there would still be a lot of risk factors as well as the chance of not carrying to term. I just hope that the man I end up with will have the patience of a saint cause he'll need it just to handle me, never mind when it comes to starting a family with me. 

I think the biggest thing to come out of the diagnosis was the relief I felt, just to have an answer! While it wasn't the one I'd hoped for, I'm happy to know what's been going on. Because it's genetic, there is no cure just a treatment. I'll go through Hormone replacement therapy which will supply me with the hormones I've been missing and I think I'll go for various checkups to make sure everything is as it should be and to make sure that I've not developed any of the symptoms above. 

I would just like to thank the people who have known as long as I have and have been supportive throughout, you know who you are and you've been my absolute rocks! I don't think I'd have handled this as well as I have up to now without having such amazing people around me. Also, if I didn't tell you personally but could've (if you're family or friends) please don't take it personally if this is how you're now finding out, I wanted as few people as possible to know until I knew enough and had been able to process everything because there's nothing worse than people asking questions about things when you don't have a clue. 

I'd like to round this up Aesops Fable style with a few morals to learn from my post. 
1. Always be your own advocate, if you feel something is wrong with yourself, push to find out, until you know for certain, don't always take a doctors word for gospel. 
2. do not procrastinate when it comes to your health, while I was hindered by doctors at first, I should've gone back when I was meant to, things would've been a lot easier I'm sure.

 I've thought about posting this for a while and I decided that now would be a great time as it is actually turners syndrome awareness month, if you do want to know more have a look at:

http://www.mayoclinic.org/diseases-conditions/turner-syndrome/basics/definition/con-20032572

http://www.nhs.uk/conditions/Turners-syndrome/Pages/Introduction.aspx

tss.org.uk

Or of course if you'd like to ask me then that's okay too

I'm sure these websites will offer a lot more comprehensive information than I could right now but hopefully I will know a lot more about myself what everything means for me as time goes on! In the meantime, rest assured that I am happy, healthy and still the exact same Hayley that I've always been, I still laugh and talk way too much, I still make terrible jokes and I still love a good tipple (or topple.. am I right though.. I'm right!) basically, I'm like a cocktail you've always loved just with an ingredient you didn't know was in it... is that a good analogy? :')

thanks again,

Hayl xo

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School (and the things we all did)

I am so sorry for how long it's been since I last posted, I wanna say I've been a bit busy and it wouldn't strictly be a lie buuut it hasn't exactly stopped me from posting so it'd be a bad excuse! Anyway for this post, I'm going to be going down memory lane once more and delving into things we all did in secondary school!

1. Walking into school one morning and your mate reminds you about that piece of homework you had to do and having a mad rush to either get the work done or think of a good excuse. An alternative to this was definitely spending the lesson praying the teacher and the teacher's pet also forgot about the work!


2.  Getting home from school and logging into msn as fast as possible.. just to speak to the same people you've seen all day at school, and who can forget the prehistoric facetime that was webcam chat.


3.  Speaking of msn.. did anyone else put ALL of their friends in their PM in order of their faves and then either demoting people that you're in a mood with to a really crap emoticon or just full on taking them off your name!


4.  Also... remember the dark age before Facebook and we had Myspace? Yep, before the days of captioning photos with song lyrics or emoji's.. we had 'comment 4 comment' and top 10 friends


5.  Every time you had a substitute teacher.. it was kind of standard practice to wind them up a bit and just give them general grief for the entire lesson! Chances were, you'd never see them again OR you'd get the over confident bloke who bantered on with the lads a bit too much and didn't really care what anyone else was getting up to.


6.  Cooking and PE on the same day? NIGHTMARE! Not only did you have to carry your PE-kit as well as your school bag (which was obviously fully equipped with a full pencil case and god knows what else you thought you needed for school) but now you had to carry all of your cooking stuff too which sometimes included massive casserole dishes as well as ingredients. This is even worse when you don't have lockers to dump your things in till the specific lesson.


7.  Also.. was it just my food tech teacher that would bring the entire class round the table to talk about what we've done, just before it was time to take our things out of the oven? I swear, I was nearly always 20 seconds away from having black scones!


8. It can't have just been our PE teachers either that had ZERO sympathy for us. Cold day? 'get out there, it's not even cold'. Hardly able to breath when on your 2/3 laps of the massive running track? 'If you don't go any faster Hayley, I'll make you do an extra lap'. Someone hits you in the foot full force with a hockey ball? 'you should've worn more appropriate shoes, rather than plimsolls', They had zero empathy, letting us freeze while they've got a massive hoody on or a rain coat.


9.  When there was always a rumour going about that 2 of your teachers were seeing each other. Turns out, ours actually were, They got married a couple of years ago!


10. Being asked to hand out the text books and giving the people you liked least the scabbiest one. Not only that, and I don't know if it was just in our school, but writing or following people instructions in the textbooks e.g. 'go to page 184' and following it to end up on a page that said something so daft like 'If you read this, you suck' or other, less pleasant, variations.


11. Your mum buying you a uniform a size or two too big so it'll last longer. Fortunately, we changed to the fetching blazers in my photos in like year 10 and I wasn't doing much growing so mum actually got me the right size!


12. Finishing  an exam and discussing answers with your friend only to realise that one of you got it spectacularly wrong cause she got 82 and you got 28... This was such a regular occurrence for me, absolute nightmare!


13. Highlighting anything and everything when the teacher said 'highlight the key bits' because in your head, the colour of William the conqueror's top was a key factor in the beginning of the battle of Hastings.. Obviously…


14. Trying to catch your friends eye during an exam, not to cheat.. No of course not, it was to pull funny faces at them!


15. All running to the designated fight place as soon as you heard there was gonna be one! Ours was a 'swirly' (not anymore) hill down the road from school, just far enough that people thought the teachers wouldn't get involved.. They always did though, as soon as there was a whiff of the entire school running to swirly hill!


16. Now a lesson with a supply teacher was NEVER complete without winding them up something rotten! There was one teacher who was a regular supply at our school and he had my class for English, I spent the best part of the lesson arguing with him that he was attempting to teach us the wrong thing.. I wasn’t even lying, he was trying to teach us something we learned in year 8 so it was for the year 8 class he'd have that day.. Definitely not us! He was so used to the winding up that he didn't believe me until he actually checked the lesson plan our teacher had left for him!


17. When your teacher sends to go and get something from another class or part of the school so you just walk as slowly as possible and do anything to stay out of the class for as long as possible! What was better was when you got to go into your friends class and speak to them while you're 'on a  message'


18. Did anyone elses PE teacher whinge on about everything? Spraying deodorant, drinking lucozade, eating generally unhealthy foods… cause mine did so often!


19. Using any slight injury to go to the medical room and get out of lessons! Now this is something I did so often, once I got kicked in the knee by a boy in english class and I properly played on it, asked my teacher if one of my friends could take me to the medical room and limped the entire way there in case any teachers saw!


20. Lastly, I know for a fact that this wasn't just me and my friends or my school - Using music and art lessons as a general fuck-about. Art was more so for me because I did it longer than I di music but they were literally an hour of doing the bare minimum work and just messing on! We used to dance about in the art cupboard while pretending we needed supplies or sitting in the other part of the art room where our teacher rarely went pretending we were using the projector or something.. Little tinkers we were!


So that has been school and the things we all did.. Perhaps not everyone but I know plenty of people did do these things and of course we found ourselves hilarious, thought we were mint the lot, what a scream! Let me know if there's things on here that you didn’t do or maybe there are things you did that aren't on the list, I wanna know!!

Hayl xo

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Random thoughts #laziness

Good (insert time of day while reading this) to you, obviously my title has been quite misleading  thinking you would now be reading an interesting, perhaps even funny post and you will not be reading such a thing. You are now however committed to reading it and I am trusting you to carry on reading past this point so no clicking off now!

Every now and then I will have the odd silent moment to myself where I have the chance to think about really random things/situations so I am now going to fill this post with as many random things that I can think of that I have thought to myself about.

* What would it be like to be the pope? It's common knowledge with the people that know me, I would love to be the pope.. I literally don't fully know why, all I know is that of all the people/roles in the world I would love to be the pope. I genuinely think it would be great to drive about in the pope mobile for the day!

* it's so weird that when things get sent to the queen for her royal ascent, she never says no because if so many people want it (enough for the paper to be sent to her) then who is she to deny it. My law teacher even says she wouldn't even say no if it was to get rid of the monarchy - I would personally say no if I was the queen but each to their own.

*Speaking of the queen, what does she think about, what does she really love doing, does she enjoy reading, does she knit? I bet she loves a good crossword or a sudoku. Also, has she ever changed any of the royal babies nappies or even anything of the sort.

*Who decided words are words and that they mean the things they mean. Like who decided to call the thing we sit on a chair, its mad!

*What do dogs actually think about? They have such chilled lives - what would my little cass say if she could speak to me? (Probably "get me a treat now")

*You know when someone is talking to you and they say 'is that OK?' what would they then do if you turned around and said 'well actually, no it's not OK' like honestly what would they do?

*What goes through peoples heads when they're so unnecessarily rude to other people? Don't get me wrong my skin is pretty thick, I can 100% take it from people but there's plenty of people that can't. Just an example is the other week I was at work and someone rang up and asked a question I physically couldn't answer, nor could anyone in the office (had they given me the chance to fully explain our process he may not have been so rude) but he ended the call by saying 'that's great that you cant answer my questions, thanks, bye.' there's just no need in it at all

*where do people that come up with horror stories get their imagination from, what actually possess' people to write such grim films.

It's been ages since I actually wrote something and for that I'm sorry, I just can never think of anything I want to write at all. It's so annoying, if you have any ideas or can think of anything that would be good, please let me know in the comments!

Hayl xo

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