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