About Me

Hi :) I'm Charlotte! Im 18! Just like any other teenager in the world but everyday I live with Juvenile Idiopathic Arthritis Polyarticular Rheumatoid Factor Positive. Its not the same as 'old people arthritis'. Its a serious chronic auto-immune disease and attacks the internal organs and eyes aswell as the joints and there is no cure. This is just my blog where I like to write about daily battle with pain, fatigue and other challenges I face. Take a look around, theres plenty of posts, photos and videos, help me raise awareness and enjoy my journey!
"Be kinder than necessary for everyone you meet is fighting some kind of battle..."

Monday, 10 February 2014

Its been a while.

Since I've been on here, its been my birthday, Christmas, my brothers been deployed on a 6 month tour and I've had developments in my illness!

I feel like it's time to start writing again, I've been struggling a lot lately and I've been missing writing; I'm sorry I ever stopped.

So I've had my 19th birthday! My brother bought me a guinea pig, my boyfriend bought me a Michael Kors handbag and my parents bought me a trip to Dublin! I just have the best people in my life :)

So I took my boyfriend Ryan to Dublin with me, 2 days after his birthday, 3 weeks after mine! It was late November so it was cold but it was all decorated for Christmas - which I love!! It was so pretty! We had such an amazing time! I couldn't believe how much we did in such a short amount of time - although I did pay for it, I had blisters and extremely achey legs! Luckily the hotel had a bath where Ryan kindly ran me bubble baths :) - he's got very good at them! Note to self, do not wear heeled boots when travelling and having to walk further than you first thought! My poor body.

However it was just so amazing, I didn't care! We went to the zoo, and the Guinness factory place, and to the castle, and museums galore! We even did a spot of shopping, walked around some beautiful parks - well I sat on every bench round! And then we went on the Viking Splash - if you ever visit Dublin, you must do this!! Amazing fun.

Christmas was loooooooovely. However I had to work Christmas eve and Boxing day so it was very rushed as we always spend Christmas in Leicestershire with our family. Ah that's another thing - I worked for Next - worst company ever! Don't work for them particularly if you are disabled. I told them on my application form and in the interview and they agreed to make adjustments for me, however when I sat down on the shop floor - out the way in the changing rooms, I was told off, told I looked bad in front of customers and was sent to work in the stock room! ugh. I made a point and was allowed to work on the shop floor again and then when my contract finished I left that place. pfffft. anyway back to Christmas.. it was lovely! I got a handbag..of course :) It was before my brother would be sent away on tour for 6 months...he's gone now. Been gone for like 2 weeks, :( miss him lots!

My illness? Well... It is now clear that my what once was Juvenile Arthritis is now Rheumatoid Arthritis with an overlap of Connective Tissue Disease that they think may develop into Lupus.. Brill.  So that's, RA, Fibro, Raynauds, CND and I've been suffering from chronic headaches, they've yet to find the cause for! I am also changing medication which is exciting and scary. Enbrel is not working and methotrexate is making me very sick. I am going to start rituximab! Anyone been on it?

Lately I cant stop sleeping! Its horrible! I feel like I'm missing out on the world, because I'm spending my life asleep! I always say "we can sleep when we're dead" and then 2 seconds later I'm snoring the house down..

I've been trying so hard to find a job and its so hard... everyones like why don't you do this or that? And trying to explain to them that I physically cant is exhausting me and very embarrassing! I wont give up though.. I want to work at a funeral directors as an arranger and train as an embalmer! And then be a self employed embalmer! I find it best to work for myself if this illness is forever.

Anyway, Tomorrow I am off to spend the rest of the week at Ryans, its valentines day and he took It off work! how sweet.

If anyone knows of any funeral directors or some miracle workers. let me know.

All my love
C x

Wednesday, 9 October 2013

National Arthritis Week

So this week, 7-13th October 2013 is NATIONAL ARTHRITIS WEEK. And this time round its all about 'making a pledge', so I've pledged this blog post to it! what are you going to pledge?

Arthritis Research UK sent me this questionnaire to do, so you can understand my arthritis better. So here goes..

10 things you may not know about my arthritis
 
1.         The condition I live with is called: Juvenile Idiopathic Arthritis Polyarticular Rheumatoid Factor Positive
 
2.         I was diagnosed aged: 16 years old!
 
3.         How my condition most affects my day to day life: Constant pain, major fatigue! I find it very hard to carry out daily tasks that most people take for granted! I also find it hard to function in the morning - my joints are very stiff!
 
4.         A new hobby / interest I’ve taken up since my diagnosis: BLOGGING!
 
5.         What living with arthritis has taught me: That hospital food is definitely horrible and to always smuggle in a dominoes pizza!
 
6.         My advice for other people living with my condition: Don't bottle things up! Always talk to people, don't push yourself - learn your new limits!
 
7.         A gadget I couldn’t live without: my mummy! :)
 
8.         What gets me through a tough day: my mum! a rant and a good cuddle!
 
9.         How my friends and family help me: I have a very good supportive network around me! My family and friends are so great, they always help me when I cant do something and always encouraging me!
 
10.       This National Arthritis Week I’d like to say thank you to: My family, friends, health care professionals that have helped me and my READERS :)
 
 
So now, its your turn to pledge something this National Arthritis Week!
 
Love C xox

Thursday, 26 September 2013

Boyce Avenue

Hey guyyyyyyyyyys!

So last night I went to a Boyce Avenue Concert in Bath with my boyfriend! It was so so so so good! We played it quite well, we went and sat in a bar until the queue had gone down so I didn't have to stand around and then we still managed to get a good view! And although there weren't any seats I managed to park my bum on the railing next to a wall so didn't have to stand! :-) Anyway they were absolutely AMAZZZZZZING. Definitely worth the pain! Loved it!

So after finishing college I enjoyed my summer because obviously I've spent the majority of the last 2 summers in hospital :( I was then gonna go on a break kinda like a gap year but not for a year just until march when I want to go on a Funeral Service course. But i'm bored already, so i'm looking for a job, but its impossible :( i'm off to my jobcentre appointment tomorrow, yay. Someone give me a job. please.

Seeing my best friend Charlie tomorrow, I think we may go swimming so that should be fun! Just gonna chill.

ALSO, it's National Arthritis Week SOOON! Starting October 7th!

Anywho i'll post soon!

Love C xox

Monday, 26 August 2013

guess whose back..

Since I wrote that last post people have told me it was the wrong thing to do and to carry on... well I feel i'm ready to write again.

I don't know where to begin. What's happened since?

Well I've graduated from college! Achieving the highest grades possible! So I now have a triple Distinction* in Forensic Science! Come at me CSI. Jokes I wanna go in to the funeral business and embalm people cause I'm super weird.

My Arthritis, Fibromyalgia, Psoriasis and Raynauds is fab incase you were wondering. We're doing just fine, we're like a little family, all working together to put my body through extreme pain and fatigue and other crap making it fight like there's no tomorrow. I'm actually so done with fighting when it comes round to a zombie apocalypse I wont bother fighting and running, i'll finish my last bag of pasta and let the zombs eat me.

On a serious note, my bones and joints are all good, I had xrays and they came back normal! Apparently the only thing stopping them from getting damaged are my Anti-TNF injections so I have to stay on them :( I've just changed Methotrexate injections where I make it myself, they're icky and make me feel icky also.

I've stopped being so tearful and anxious which is just brill, being a soppy twat is not fun. AND AND AND I went to Amsterdam this summer with the boyfriend! We've been together a whole year now, that's pretty cool really, considering he hates injections and i'm always too tired to go out - I must be a very strange girlfriend to have! Bravo Ryan well done. Also Amsterdam was soo good! Went to Anne Frank, deffo recommend! Not so much Van Gogh.. Also I did try marijuana.. I heard it helps ease pain - lets just say that was an experience..one I wish Ryan hadn't filmed! It was a tiring holiday but luckily he loves to nap as much as I need to! Brill holiday!

Doc says to try my nortripteline and if it don't work, I have to go on gabapentin or something like that?! She says the side effects are eewy though so we'll see :( She also found some antibodies in my body..quite a lot of them..that are associated with rheumatoid arthritis and in about 8% cases of psoriasis.. I don't really know why i'm writing all that cause I don't really understand it.

I got a parking ticket the other day, for parking in shopmobility instead of disabled... it had a disabled badge sign! note to self: read the signs more carefully. bye bye £35... who would put a ticket on a disabled persons car.. harsh..heartless soul!

Anyway you remember that project I did with youthhealth talk? yeh here it is... browse through it all, im in there somewhere so are my parents, i'm looking reallllly fat! It was the steroids :(
http://www.youthhealthtalk.org/young_people_with_arthritis/


write soon, hopefully.

love C xox