"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


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  3. I was 14 when I was first diagnosed with Juvenile Idiopathic Polyarticular Arthritis, I'm now 15 and having troubles with the depression and Isolation factor, I was wondering what worked for you to help with that?

  4. http://ourarthritisjourney.proboards.com/

    A forum for parents and families dealing with the diagnosis of Juvenile Arthritis