My blogs are like busses! Nothing for a while then two at once! Emma has just got on the train home and I am on the bus, so I thought I would update you on what has happened during her visit!

For those of you who don't know, Emma is my fellow wheezy friend who I met on an Asthma UK weekend in Birmingham. We meet up occasionally and she comes to stay at mine - which normally ends up in some rather funny moments being had and lots of tea and biscuits being consumed! 

I met her from the bus on Monday evening and we went to sainsburys to get some drinks and nibbles. Que lots of junk food and fizzy drink (we are so mature)... Then we went back to mine and had dinner before watching some Greys Anatomy (she is a fellow addict) and preparing some pretty awesome ice cream... 

My gosh it was goooooddddd! 

By the time we had finally stopped nattering and Emma had eaten a WHOLE PACKET of choccy hobnobs it was gone midnight and definitely time for some sleep. 

We didn't have anything major planned for Tuesday so we had a lay in and went into town around midday. We went and did the usual weekly drugs run and had lunch in town, twas very yummy! Then Emma acted like a child in the supermarket and decided to climb on the back of the trolly... She got a few weird looks. But then she is unique in many ways! (Love ya really Emma!)

Once we had arrived home and packed away it was craft time! Emma decided to use some of my extensive supplies to create a scrapbook of her life and her bucket list. She did a couple of pages which looked really good - but I didn't tell her that, after all her head is big enough as it is... Then it was time to cook, eat and watch some crap on tv before bed. 

That brings us to today... For a while I have been worried about how things don't seam to be getting any better with my asthma. Im still on pred, and needing regular extra doses about once a month to keep me out of hospital or to fix me up a bit more whilst I am in! I've always been rather intimidated by my consultant - he is rather stern so I get a tad nervous at clinic. This month I took Emma with me for morale support and she was super! 

I told him about how I feel we have come to a standstill, and that things are not getting any better, despite being on everything which he uses. He was under the opinion that there was nothing at all which may help out there, and said that things such as s/c terbutaline and steroid sparing agents don't work. Which means I had reached the point where it was time to accept that I need to stay on pred, because its the only thing out there that will keep my asthma under some sort of control. But that we should keep pushing it to see if we can lower the dose of pred because it is doing so much damage to my body. 

However, every time we have tried to lower the dose (at least three times) I end up in hospital and on an even higher dose than before. Making it a pretty pointless exercise! I could learn to accept that I will always require some sort of  maintenance steroid, if I knew that we had tried everything else. But we haven't, and in my opinion the other treatments must have some value if they are actually used by other centres. To me, even a 10% chance of success is better than a 0% chance, and a future of pred and all it's side effects. So after me voicing my opinion he suggested a referral to a tertiary care centre, like heartlands hospital, which has a severe and brittle asthma unit. Which, if I am honest is what I wanted - but I wanted him to suggest it, not me, so that I might have some chance of shared care! 

So basically I am now awaiting a referral to heartlands and keeping my fingers crossed that they will be able to help. If they can't, I'm going to have to start making some decisions about what I want to do from there.

So, after that we buggered off to nandos and had some piri piri goodness! We were both starving and thirsty so it was like we had reached some sort of Mecca! Emma was a wimp and had piri-tamer on her chicken - no spice involved! I went for hot with some extra hot sauce on the side. Cause I am tough and that is how I roll. Haha! Once we had munched our way through that we headed off to costa and chilled there for a bit before Emma's train was due. Whilst we were there Emma was put behind bars, right where she should be! 

Her crime? She forgot my cake order and  made me share a piece of tiffin and some window cake with her. Never forget a roid raged chipmunks cake order!! 

After that it was time to say good bye. I always hate that bit of a visit, but we have plans to meet again in November and December so it's not so bad! She is starting to become a bit of an addition to the household, I made her make her own drinks and breakfast! 

Anyway. That's pretty much it, there hasn't been anything worth reporting since then. I've just had a lazy day and done as little as possible... I am going to sign off now, but will update soon, as its invisible illness week this week so I feel like I need to mark it somehow!

Nighty night -
Kirsty x

So, now I've got my head bit more together I shall update you all on what has been going on in my not-so-exciting life! Though this is currently proving rather difficult as I have a memory like Swiss cheese and can't quite recall what's been going on! Is it sad that I am actually running through the days in my head and trying to remember what I did?! Anyway, however sad it is, it has yielded some results as I have something to write now. Amazing I know.

Thursday 29th August...

Woke up feeling pretty damn awful, in pain and wheezy, so I had to cancel the appointment I had at addenbrookes. Thankfully they were great about rearranging and I have got another appointment booked already for next week. I spent the day at home chilling and not doing anything much, by early afternoon I was feeling a bit better so I saw my friend Stacey for a bit.

Saturday 31st August 

I spent a lot of time working on my camp blanket on Sunday, and managed to get most of the badges sewn on, and then I glued the rest down. I glue them and sew around afterwards, as it holds them down... Here's a picture of my blanket!

There was also an incident with my lovely cat, Tilly. She attacked my foot and ran off. So I sprayed her with a water gun. Then we made up and became friends again! But, as I climbed into bed I accidentally kicked her in the face. I felt so mean!!! Que me standing at the top of the stairs, calling down to her and throwing dreamies in an attempt to tempt  her back!

Tuesday 3rd September 

Sienna's 7th Birthday was on this day... It was crazy to think she is such a grown up little girl, when I can actually remember her being born and visiting them both in the hospital. I went over to drop off her prezzie and she also had Isla there, who was attempting to walk! She looked so cute... 

I also received my mailing from the OU of all the course materials for one of the two modules I am starting this October. Having now had a look though I am very much looking forwards to getting going... This is mailing one of two!

 Shouldn't be long until I get the last one now, then I will be all sorted and ready to get going.

Thursday 5th - Saturday 7th September -

My friend was going away for a night, some sort of family do, so I went to Ellie's in evening and stayed there whilst she was away to look after her animals and keep them company. She lives in a village, which is rather small and doesn't have much in the way of public transport so entertainment isn't readily to hand! Thankfully she has one heck of a stash of craft supplies so I went nuts in there and got busy playing with stamps, a big shot and promarkers... Amongst a few other things!

As you can see I managed to cover myself in stamping ink...

  I also made some Ellie owls for her craft room door :) 

Sunday 8th September 

Ellie had arrived home on the evening of the Saturday and so we decided to go to a craft fayre which she had read about. It was really good, lots of things I would have loved to buy, but not enough money! I did get a few good bargains though and lots of ideas for things to try out. My plan to only take cash definitely saved my card from getting a good bash in! 

Anyway! That leads us to now, and after Emma, who has been here a couple of nights, has gone home I will fill you in further... Ill be able to tell you all about her visit and my clinic appointment today. 

Nighty night,

Kirsty xx 

Sad news, a quick update.

Hey all,

A fair few things have happened, one of which is something that I can't believe I am having to tell you. 

A girl I know, a friend, who also suffered from very severe asthma, has passed away having had an attack. She really was a lovely person and I wish I had taken the time to know her better. She was really helpful when I needed advice regarding treatment options and she really took the time to chat and share her experiences. I'm not going to sit here and pretend that I was her best friend and knew everything about her, because I didn't, but the death of anyone from an illness which is close to home is always hard. 

What I do know is that she was as kind and caring towards others after her death as she was during her life, donating her organs and saving the lives of so many people. The world is truly poorer for the loss of her and I am deeply saddened by her death. My love, prayers and thoughts go out to her friends and family as they come to terms with their loss and their futures without her. But I hope they find some comfort in the fact that her death, however tragic, brought life to so many others.

Sleep well Dawn, fly high and breathe easily, knowing that you are a beautiful person inside and out. Thank you for allowing me to have the pleasure of knowing you.

I can't think of anything else to say now. Everything just seems to pale in comparison, and anything I have to say feels tiny. So I am going to sign off here, and update again when my news, and what's been going on in my life, feels like it's regained some significance.

All my love,

Kirsty xx