Point scoring

Long time no blog! I do have my excuses...honest. Well I've had numerous attempts at updating but theres been a problem every time. I did have some problems with my laptop, and it just kept crashing every 5 minutes, so obviously my blog updates kept getting deleted! However, my laptop has since been in for yet another repair, and once again has had to be wiped clean! Grr! So I lost everything again! Anyway, never mind. This blog attempt WILL work - no excuses this time!

I had a pretty good christmas and new year!
Steriods kept me feeling great right up until christmas eve [typical!], but I wasn't feeling too bad, just a little tired and sore and not as hungry as usual [lol!]. We went out for a drink with some friends on christmas eve night and then came back and had Nigels nommy stew!

Christmas morning I was absolutely spoiled ~rotten. I got an amazing new phone, which I am absolutely obsessed with! It holds music, which is what I wanted and also has internet access. I don't know how I've lived without it all my life tbh! I also got lots of other nice goodies - clothes, makeup, gift vouchers, pyjamas - I was so lucky!

Christmas day I went round to my Dad's for a bit in the morning, and then to my Grans for chrimbo dinner, and then to Nigel's parents later on at night. It was a ncie day (:

Boxing day I went to my Dad's for dinner with my Nan and Grandad. Dad makes suchhh good food - which I can enjoy more now ;)

The next day was when we went up to Uncle Howards; me, Grandma and Grandad. Like I said, I'd started feeling a bit rubbish again on christmas eve and I wasn't feeling 100% when I set off there, but I went anyway because I wasn't too bad. When we got there we had a quick sit down and then got ready to go out for an indian. When I got to the Indian I was feeling really awful and really sick. I decided not to order anything and by the time everyone elses food arrived I was struggling even with the site of it. When we got back home I went up to my bed and just couldn't take it. So in the end, we decided to drive home at some stupid hour. It was horrible and the next few days I'd never felt so down. Its the worst thing ever when not only do I ruin things for myself - but for everyone else aswell! But I won't moan about it - that was that.

New Year was good fun. We went to Auntie Vicki's house and she had a little party. I spent the night entertaining my Mum's friend's adorable little girl. I was pretty tired and still not feeling very well so sitting with Lou and doing colouring was nice. Then I went and sat upstairs with Chris and we just watched TV until New Year hit! After that, everyone sort of broke off and went home and we just sat and nattered for an hour or so before James dropped us back off.

College started again and my taxi picked me up on the first monday back, to get there and find out college didn't start til Tuesday! It's a bit silly considering college are the ones that book my taxis! Never mind! The next day was even more adventurous as the snow hit! It took an hour and 20 minutes to get to college and our college was the only one that was open! Despite the snow, I managed to get in every day it was here which is good!

Things did continue to go downhill health wise. I was supposed to be back at GOSH on 6th but we couldn't go because of the snow. So, we ended up having a phone appointment. It was decided that I would start a new drug alongside the steriods [with the hope that we can bring the steriods down eventually] - Azathioprine. I had to go in for blood tests to check all was okay for me to start them and then we just waited to hear. The next day they phoned and said it was ready for me to start so to go and collect it, so we did, and I started. For the next 5 weeks I must go for weekly tests; full blood count, kidney function, liver function and blood pressure. Then after that, on the condition all is well, I can then go for the tests every 2 weeks and gradually they will go to every month.

5 days after starting them I woke up in the night feeling really sick, shaking, hot, dizzy and had blurry vision. So we rang NHS direct and they got a doctor to call me back really quickly and he wanted me to go up there and get checked out. He was really good, he saw us straight away and spent about half an hour - an hour with us. He was concerned about me having an infection, with these new drugs suppressing your immune system so much. But he said that everything was "ok" and that it was most likely the lovely side effects starting to kick in, as well as me being lower on the steriods and things still not being right inside, so he sent me home.

On a more interesting note, I now have a name for my illness. Enteropathy. On my latest GOSH letter, it was written as my "problem" and the doctor I saw in the night referred to it as that as well. He was so good at explaining it to us - Mum and I both said we learned more that night from him about my illness than we ever had. He didn't want to just fob us off, and actually seemed to have answers to all the questions we asked. The word only means "intestinal disease" - however, that is what I have so, be it an umbrella term, giving it a name is much easier than waffling every time anyone asks or just referring to it as "the illness".

The next day, we got a call from my doctors surgery [who were oblivious to the nights events] saying that my blood count was too high, suggesting I had an infection so I wasn't allowed to start the new medication until it was normal.

Oh.

Well, they should have told us that sooner. Like, before they told me to start it?

Anyway, we spoke with one of the GP's and she lowered it down and said to build it up over the next week which we have done, and I'm now back on the full doseage and so far its going ok.

I know I'm able to do so much more than I could this time last year right now, but at the moment it just feels like my illness is always point scoring against me! I'm really greatful for all that I can do, but living in the "normal world" again, despite not being as normal as everyone else can be a bit frustrating.

I was sposed to be on a drama trip today, with my drama class, but I just never would have managed it. I couldn't decide what to do, and I really really wanted to go and would have given anything to be able to. I feel so tired and yuck all the time at the moment though I just don't think I would have got through it. So it was 1 point to "Enteropathy".

Apart from that, life is pretty good. I have amazing friends, who I really couldn't be without and who make every second of my life absolutely fantastic. I'm doing well at college, passing everything [other than citizenship, which really is a load of tosh! and nobody has got a pass yet; oh dear] and also really enjoying it too! My attendance is really good, I'm only missing the odd lesson here and there and am managing to do work from home whenever I do miss college.

I went into Donna's this week also, and saw everyone again and I'm trying to make ita regular thursday morning thing if I can, and will be making it a friday morning thing once my tests are out the way, or when I'm having them in an evening [I'm having them on friday mornings mostly atm]. And I also did bag packing at the weekend with Step-Up in Sainsbury's to raise money for The Blackpool Tiggers which is a local place that supports children and young people with Autism and their families. That was really good fun, and really good to see everyone from Step-Up again too!

Hmmm, I think that's about all up to date! I shall try and blog more. I find it really therputic and I do miss it!

Thanks anyone who checks in! xx

It SNOWED!

It NEVER snows here! But it has done and its so pretty!
Saturday morning I got my last bits of christmas wrapping done and presents sorted and stuff, and then in the afternoon I went to meet Sam and Susan which was really nice. They were staying at a hotel in Blackpool as they came to see a Robbie Williams tribute who was playing there over the weekend. Was great seeing them both again, they're fab! We talked lots about Thomas and did have a few tears, but also a few laughs at his mad moments and we exchanged chrimbo presents - I got very spoiled, one off Susan, one off Sam and one that Thomas had bought me back in September, which I found really nice. I haven't opened them yet but they're all sat nice and pretty under my tree.

The tree is BULGING with presents. Lots that I have bought, although I've given quite a few of them out now - they're mostly ones to family. The even more that have been sent to me! I can't believe how lucky I've been this year - I'm going to be there forever on christmas day opening them all! I can't wait!

I feel soooo christmassy this year and I'm so so so excited for christmas!

On Sunday we had a little bit of snow in Lytham, but it was something and nothing. But we headed out to Nigels house in Penwortham and they had quite a bit of snow up there! Then to Matalan near Nigels, because I needed to pick up some more bits - for my Dad and for Nigel for christmas, and also I wanted some thermal leggings and a polo neck because its sooooo cold at the moment! So I got all that - got some slippers and some socks for Nigel to go with a CD he wanted and for my Dad I got some cosy socks to go with the hoody I bought him.

After Matalan we went to Nigel's parents and saw his auntie who is over, and swapped our christmas pressies and had a cuppa and some crumpets ;D, then we went to Sainsburys to get christmas food, and I wanted to find some stuff to make shortbreads, like christmas cookie cutters but they didn't have any.

Then I went round to my Nans to give her and Grandad their christmas card and also one for my Dad who I didn't see yesterday because he was ill - so they'll give it to him when they see him.

Yesterday the plan was for Amy to come down to ours on the train, then we were going to go up to Laura's and stay there a little bit, then bring Laura back and then they were going to stay until tuesday night. It didn't quite happen though because of the snow! Amy's trains were cancelled and all the roads up to Lauras were blocked so I won't get to see either of my best friends for christmas :( which is rubbish! But hopefully we can arrange it again some time in the new year and it will be just as fun.

So I went out for a walk with my Grandma and Grandad, and took some pretty pictures with my camera in Green Drive and then we went up Lytham - more christmas bits [yes I really am FINALLY done now!], and then to the hospital to pick up my prescription. We walked forever and I was shattered when I got home - it felt good though. While we were walking through Green Drive taking pictures, we remembered last year when I had gone through there to take pictures, and how it was such a big thing for me as I couldn't go out very much and how Grandma was pushing me in my wheelchair. Despite - I was still more tired last year than I was this year [on top of the long walk and everything else] by a long shot!

So I came home, had dinner and chilled for a bit, then later at night my friend James came round and we attempted to build a snowman, who went a bit wrong, and then came inside and watched Ice Age.

Today I woke up, had my breaky and got ready and then did a bit of my english essay. Then I had some lunch, chilled for a bit and then made some shortbread buscuits! They turned out really nice, and we tasted them and they're so yum <3.
As its still pretty and snowwy outside, I wrapped up and went for a little walk. I went to the library cause I needed a book for my english essay but they didn't have it, and then walked to my Nan's to give her some of my shortbread biccies, and then back again.

And that brings us up to now!
I'm having a great christmas so far and really enjoying the hols and being able to chill a bit! I've managed to pick New Moon back up again at last and I've got a great Christmas planned!

Just seeing family on the day, I'll probably go round to Dads/Nans for a bit in the morning, Grandma's for lunch and then Nigels parents to see Nigels family later on in the day.

Boxing day I'm going to my Dads and hes making currys and chillies for people - mmmm, and I LOVE my Dads cooking. Then the day after boxing day I'm going up to my Uncle Howard's in Derbyshire with my Grandma and Grandad for a couple of days which should be good. New Year I'm going to my Auntie Vicki's and then hopefully on 2nd I'll be going to watch panto in Basingstoke!

I really cannot wait for christmas this year, its going to be a good one (:

Long time!

It really has been a long time since I updated! So, I'll just do an overall update, rather than day by day.

Since upping my steriods I have deffinitely felt better again... and eaten like a horse.

Currently, I'm on 35mg and still going ok, although I have had a few flare ups the last few days. Nothing too major as far as original problems go though. Mostly just the side effects that are bothering me now - but I'll put up with them. I can get on with being "normal" with the side effects, where as I can't with the symptoms of my illness. I've certainly got a lovely noticable moonface now, and I continue to put on the weight! So I'm going to start a bit of exercising to make sure I don't end up like the half ton man ;) [who EVER would have thought I'd be 1)exercising - just like that. and 2)doing so to control weight!!]. My chest pains have been worse, but they come in waves and are more or less tolerable. My legs and back are also getting sore and my legs are deffinitely feeling weaker.

I went into college last week 2 half days without my crutches (first time ever! was so chuffed with myself!] - and then this week I was back on two again! Which was a bit of a bummer - I don't mind too much though.

I've had a few more exams and results and stuff since last update also. I found out I got an A and an A* in my English courseworks which I was SUPER pleased with! I got an A* in my Child Development coursework which I was equally as pleased with, and I got a B in my second science test which is much better than the C i got in the first one. Out of the two, only one test gets put forward towards the final mark, and its whichever one is the best - so that means the B will go forward of course and I'm very happy with that! We also had this little award thingy this morning, for each subject the teacher chose one person to recieve an award for doing well - and I won the Child Development one! So all the winners got a £10 gift voucher for whsmiths :D I'll be spending that in my shopping binge after chrimbo I think ;)

We also had a little party thingy at college this morning, with Kareoke and christmassyness and that was really fun :D I don't usually have college on a Friday until 1, but the college finished at 12 today so I didn't have any lessons, and from 10.30 it was the award + partyness so I just went in this morning for that + saw my friends and swapped some pressies!

Some friends came round to mine last night and we absolutely pigged out on sweets, and pizzas and chips and crisps and general unhealthyness ;). All my friends were supposed to come so I could give them all their pressies but in the end only Alex and James came because the others had to go. It saved a taxi though because then we could all fit in one car. So we had loads of fun on the wii [so that kind of counter-acts the junk food yea? ;)], and it even snowed for a little bit outside so we went outside in that, and then we chilled and watched some of The Exorcism of Emily Rose before they went back.

I also applied for my Alevels, and had my interveiw and got a conditional place! I applied for English, Health and Social Care, and Pyschology. I have to get at least 5 passes and I need at least a B in Maths to get on the Pyschology one. Hopefully I will achieve this! (:

Been doing lots of christmas shopping and have now more or less finished apart from a few bits and bobs, which I can just nip and get any time between now and christmas and have done all my wrapping too and christmas cards! I have the last of my christmas cards to post tomorrow, so will have to do so first class because second has finished now.

Laura and Amy are down again next week and hoping to meet up with my fab college friends while they're here! :D Plan is that Amy will travel down on Monday and arrive here at about 11ish, then we'll travel up to Lauras, stay down there a few hours, then bring Laura back down here, then they'll stay here Monday night, we'll meet up with everyone else Tuesday and they'll both head back later tuesday afternoon :)

I can't believe friday is christmas! :O wows! I'm so excited :D
I think thats about all I can think of that has happened since last time - you can see why I haven't had time to update - and I've had over 2 full weeks in college without missing one single lesson! Thankyou steriods! Hopefully they can be just as nice to me over the next few weeks and I can enjoy christmas and new year, as well as travelling to Basingstoke to see my Sam Cassidy in panto! Fingers crossed!

Quick GOSH update;

Nothing really major or exciting to report. My bloods the other day were okay, but they wanted to check again to make sure that they were "staying ok", so they took some more blood. She's upped my steriods back up to 50mg which is what I started on last time I was there and then put another med on my prescription list to try, but I'm going to try it after a week, just in case the increase in steriods sorts the problems out on its own. We'll speak to my consultant up there in a weeks time and then go from there as to what happens next.

Yesterday was a long day and I'm quite tired from it all, I was still feeling yuck with everything and I'd had next to no sleep again the night before - not too sure how I managed it actually - but I did!!

Haven't been to college today because I'm still feeling horrible and haven't really got anything to report either as I haven't actually done anything - which I do feel quite bad for! Room is still a mess, homework is not done, post is not posted - neither are replies done for those that are needed, however I did purchase 1 more christmas present online, which is the first one I've done online this year. I did intend to get a huge bundle of stuff online - but I didn't because I couldn't find anything. So I still have loooads of christmas shopping left - eep! Mainly this stuff is boys! Gah - I hate boys - what do you buy for boys? :/

Anyway. Just thought I'd blog and update (:


oh and p.s - I've started to notice my posts are so much more moany lately! I'm really really sorry! I don't mean them to be! Can I blame my steriods? ;)

Just a boring update + gosh.

Not really much happened the last few days, but this is me doing a better job at keeping up to date ;)

Monday I went into college in the morning. I wasn't feeling that great and had been up most the night, but I hate missing college. I had a reaaaally fun morning but I felt so ill and caved just after lunch time and came home. I snuggled up in bed and sat on facebook all afternoon and thats about it!

Then at night I went round to my Grandma's to watch the Preston vs Blackpool match. Anyone that knows me will know that I'm a Preston supporter but anybody who has been reading this blog may remember I was nominated by Donna's Dream House for a Blackpool mascott and VIP day a few months back, and anyone who knows football will know that Blackpool and Preston are arch enemies!

I was torn - but it hit me as I felt gutted when Blackpool scored TWENTY THREE SECONDS IN, that I'm a Preston girl at heart still ;) Anyway, the score was 1-1 so it wasn't too bad either way!

I came home before it finished because I was shattered and had an early night.
I had a much better night sleep last night, but I still felt rotten this morning. I have an appointment at GOSH tomorrow - My consultant up there phoned on friday night and said she wanted to see me one day this week, so she will be seeing me before clinic tomorrow. Theoretically, this should mean no waiting - but I'm not going to hold my breath ;) we will have to see.

Anyway, I didn't go to college today as I still feel rubbish and I need to be feeling my best to manage the train and walk to hospital tomorrow.

Theres my update! I shall blog again with anything exciting that happens tomorrow ;) x

I can't believe how lazy I'm getting...

...at updating this thing! Or maybe it's just because, once again I've been sooo busy!
Anyway - I can't even think what I did last Saturday, but it might come to me before I finish the blog, but I think I might have just have had a chill day as I wasn't feeling too brill.

Sunday I went christmas shopping in the morning into Preston with Chris, and didn't come back with a great deal - or rather I did but it just wasn't enough! I still have tons left to do. Then I came home and got into bed because I felt yuck again and I was tired and cold from shopping. At night I went out for dinner with some family because my Auntie Bev was down from London but came home early because once again, I felt ill.

Monday was college and I did the full day [well, 9-2.30 is my hours on a monday], tuesday was college again but I missed last lesson because I felt yuckky, wednesday I felt a bit miserable when I got up - but would have gone in, and put up with it had I not had a drama exam in the afternoon. So I decided to stay the morning off to make sure I was in good shape for the drama performance. So I met my drama group at the theatre and then we had a quick run through and then did our performance and got our results. I was ~extremely disapointed with mine. I tried really hard and I felt like I'd done better than I had done in all the rehearsals. My character was a bit rubbish because I started drama late so it was just where they could fit me in, so I understood that. But meh. I got a C [I probably only scraped it though] but I can bump the overall mark up a bit if I do better in my coursework on the piece.

Later at night on wednesday my grandparents came round. My Mum went in for an op on wednesday and we were gonna go for a quick tea at the carvery before she got back, but we hadn't heard anything on what was going on from Mum or Nige for 2 hours so we didn't go in the end and just had pizza at home.

Wednesday night and thursday I was rubbish, so I went back to the doctors again and she wanted to run some bloods so I went home and came back in half an hour again for my bloods [the doctors is just round the corner from us so its not too bad]. Didn't have a driving lesson again, but never mind. Then in the afternoon I went to college.
That's about it for thursday.

Friday I went into town in the morning to get some bits - sweets for my Dad [it was his birthday tomorrow so I got him a spicy food cook book and his favourite sweets], a card for him and a present I saw in one of the shops in Lytham ages ago that I wanted to get one of my friends for christmas. Oh, and I bought a BLT from booths :P
Afternoon was college, just ended up starting my drama coursework and then was allowed home early because I can just as well finish it at home! Then later on I went out to the cinema to see Paranormal Activity with my friends - oh my days! The film itself isn't ~that scary [but it still had me on edge and Alex, well I don't even know if he watched and pretty much had a big long panic attack all the way through it ;)] but its left me feeling more freaked afterwards.

Saturday [thats yesterday - nearly there now hehe!], I felt reaaaally poo so I did nothing all day but did wrap some christmas presents later on :D oh and I had a ooober nice lush bath - I only have 1 bathbomb left now :(

Finally, today I went out for a drive with my Grandad and then I went with Dad to see Nan and Grandad, and I gave him his pressies and he liked! Then back to his and we watched some TV and I tried to go on facebook on his naffy laptop lol!

That brings us up to now - I'm going to try and update more regularly now! I shall hopefully post again in a few days! :D

The Pyjama Parade!

Was fab! I had a great day (: We set off nice and early at about 8.30 and arrived at Harry and Ellie's at about 10.20. Then headed into town and got started for 11. It was really wet and cold - it could have been a nicer day! - but my cosy pyjama suit kept me nice and warm (:
So yes - it was a great day. Not too sure how much was raised yet - but hopefully lots and lots! I know that there was £33.55 in my tin though - mostly in pennies and at one point the handle snapped off my tin because it was getting so heavy!

Sunday I went to do some more christmas shopping with my Dad at Deepdale and thinking back, I spent far too much, on not very many presents - oops! Never mind.

Monday was college and then I had the doctors due to me still not being very well, Tuesday was college again but I really wasn't feeling well by the end of the day and then me and Mum went to Deepdale as when I went with my Dad there was much better stuff than Blackpool and so Mum wanted me to show her some things that I liked for christmas for ideas. I was hoping also to do some more christmas shopping but as I wasn't feeling well, I just had a quicky in outifit and a peak in river island and then we had to come back.

Tuesday night I had a bad night, being up ill and so wednesday I was off college and back to the doctors - she's written to GOSH and ask that they see me as soon as possible as the appointment I have isn't until January!!

Thursday [yesterday] was back to college. I cancelled my taxi because I wasn't planning on going in because I felt yack - but I decided to give it a go in the end so I went in late.

Last night I wrapped lots of christmas presents - eeee! I'm sort of getting there now, but I still have sooooo many presents to buy! So I'm thinking I need to go shopping again this weekend, and Chris just text me at the crack of dawn this morning asking if I wanted to go christmas shopping this weekend so I might take him up on that!