Summer Holidays and Tobi Trouble

Hello :)

So in my last post i was going on about how i didnt know where i was going for the summer holidays while i wait for my own flat, well im going to a Childrens nursing place in Hindhead. I looked round and had my assessment on Thursday and it was really nice :) the little kids are so cute! So i think i will be ok there, the staff are young and lovley and the nurses are really relaxed and kind. They have a swimming pool too ;) haha yay! So yea i hope it will be ok! I think it was a bit of a blessing in discuise not being able to stay at Treloars, cuz the ammount of other students staying has increased loads so i quite happy to get a break away.

I went to Brompton on Wednesday and it went ok, apart from they are taking me off my TOBI when my supply runs out they are not going to fund it for me - because i dont have CF and in Surrey they only fund it for people with CF. So even though i last cultured pesudomonus less than a year ago i have been refused my treatment because i dont have CF.... Its soo annoying beacuse i feel so much better on TOBI and i never get chest infections while on it! They said they want sputum cultures when ever i get an infection, the trouble is due to weak cough muscles due to my muscsle disease i cant get samples without a suction macheine so i have to now apply for my local PCT to fund me one- that will be fun!!! -_-  so yea really peeed off about that but i have a few months supply left so fingers crossed i can grow pesudo before it runs out lol as i have it all the time in my lungs anyways - i can taste it (i know its gross but my CF friends will know what i mean) So i hate my GP surgery right now! Wont bloody pay for something that makes me keep well!!!! Grrrr ok rant over :)

I got my immune system bloods back and my IGG levels have come up a bit since the steroids are out of my system to 4.3 i think, so they say i do deffinatly have a primary immune defeicney.... which we knew anyways. Ermmmm dunno what else to say really apart from the HEAT!!! OMG... its actually too hot to breathe! i need my mask a lot more and im sleeping all the time -_-  i feel like im 90!!! and a boring old fart but im actually to knackered to breathe, my oxygen levels are lower to - my lungs are really fussy, they dont like it too cold and they dont like to too hot - i can never win! It annoys me cuz i miss out being able to muck around with my college friends and i feel like im being really boring, but no one understand how hard it is to breathe in the heat and its effects on your whole body....................... moan over sorry!!!

So yup.... i am looking forward to the summer spending time with my family and Lucy and Wishing my Bestie Amy good Luck and have a great time away - it will be amazing!!!!

Chloe
XxxxxX

Prom, Sun and Summer

Hi

It was my college prom last thursday and after a long day out in London at the Royal Society i was pooped! But i had a great time with my Juicy Lucy :)


On Friday i had my heart MOT at the Brompton and it was really good! So only have to go back next year, so happy that its all ok and stable :) Just got to keep going with the warfarin and oxygen :)
Its the last few weeks at treloars with Lucy....  :( i am going to miss her loads!!

Now, the gritty stuff. The stuff i hate telling you about - the bad stuff!!! I can no longer get to my bedroom or bathroom in my house due to basically no muscle left in my legs / trunk and the balancing i used to do while mum / dad were lifting me is no longer possible. We could probably manage 1 day, if that so i am going to have to go into a care home........ My college wont let me stay with them even though they are open for 50 weeks of the year and my social worker is willing to fund my placement there with 24/7 nursing staff!!! I just dont get why they wont let me stay!!!! Anyways i looked round a home today and its really not for me! They were lovley but i would have no one to talk to and nothing to do, so im really stressed right now about whats going to happen to me.

On a positive note - its my lil sisters birthday on Friday! We are taking her out in the evening so that will be nice :) Love her and her weirdness... hahah

So yea a bit stressed but looking forward to the weekend with my family :)