So it's day three of a very frustrating admission - and I am beginning to realise how much I miss being cared for by the inpatient team that know me really well! Yesterday the doctor who came around at ward round didn't listen to me when I warned them just how quickly I deteriorate at night. She also stopped my 02, without checking my sats. Funnily enough they dropped right out and I had to go back on oxygen! So when my heart rate was rather high and they decided to stop the aminophyline to let it settle they didn't listen to me then either!

Then surprise surprise I did! So at 9pm when my sats had dropped to the 80's despite me being on oxygen they restarted it again. A rather unneccecary set back really! 

So ward round this morning the doctor actually listened to what I had to say, agreed that as I was wheezy now, and it's day time we should increase the aminophyline rate so that I don't splat in the evening. Finally someone with some sense! She also decided that we should treat the pseudomona infection with oral Cipro and nebulised Tobramycin... So off she went to check that they had some in stock. But then she came back and informed me that the doctor who didn't listen to me yesterday (and hasn't been to see me today) has decided against it and wants to treat it with oral meds. 

Basically, to put it bluntly, this doctor is a complete and utter ?@!*+$ who doesn't seem to remember that it's my body, my condition and that I am the one who has the right to call the shots here! 

Okay. Rant over. 

Health related update!!

So, last Monday I woke up with a really bad tooth ache, and after a day of trying to get an appointment, I finally got one in Newmarket. It turns out that one of my teeth has gone all crumbly and I have an abscess. If I didn't now know other wise I wouldn't believe that a tooth could hurt so much! So the dentist, confused by my prophylactic antibiotics (Clarithromycin) and scared of contraindications between all of my other medications, prescribed me a few days of Amoxicillin, admitting that he wasn't sure they would clear it... helpful! So the day before my birthday (boo) I had to ring my GP, still in pain, and ask for something better. Que the third antibiotic in the drug roulette, Metronidazole. Meaning that I couldn't drink on my birthday :( Gutted!

Anyway my tooth is feeling better, but I now have to deal with getting it taken out next week, and I am so not looking forwards to that experience. I have explained to the dentist about all of my health issues and he is going to do his best to get it over quickly, so that i am not laying down for too long. Hes worried that it may splinter as the tooth is obviously very weak, which I don't want, as that would mean it would take longer to pull all of the bits out!

On top of all of that I've had a cold and sore throat, which has made my chest feel rather manky and generally not very happy. Typical really isn't it - if it doesn't rain, it pours! Thankfully I have managed to keep my chest at bay by upping the prednisolone and nebs and also starting antibiotics as soon as possible (Que number four, Doxycycline) which helped. Get me, being all proactive!

so today was clinic day, and I had to get up and be in Cambridge by 10am, which killed me! I've still been feeling pretty rough, so it was the most activity I've done in a good week or so, shock to the system! I was a bit worried about what they would say, because i knew my lung function would be down and i was pretty wheezy by the time i got there. as i suspected my lung function was down to 53%/55% which is pretty rubbish, my inflammation levels were up and my chest was wheezy and a bit crackly. somehow i managed to escape with antibiotic number 5, Ciprofloxacin, and instructions to admit defeat if i get worse. Yay!

I also had my Xoliar, so I am full of anti allergy goodness!

My consultant also said that he has spoken to Birmingham Heartlands, and the lead consultant has agreed to see me. Addenbrookes received a letter from him on the 2nd October saying that he would send me an appointment and asked for some more information (test results etc) so at least I know things are moving along and it shouldn't be too long until I hear from them. Fingers crossed they can do something to help!

So that's it at the moment! I cant think of much else to say.

Ohh actually! My new BM kit comes with PRETTY COLORED LANCETS! I am currently using the purple ones. Last week was blue :)

That really is everything... time to go chill because my arms are sore and I need a neb and a nap. Ohh and maybe some chocolate?!

Take care -
Kirsty.

So last Saturday was my Birthday! I was 22... Isn't it weird how time flies? one month merges into the next. the months then merge into years. Before you know it decades, have been and gone before you even got their name and number. But before I start on some long ramble about time I will let you know what happened on my birthday! 

As I was awake at midnight I opened my first present! It was from Emma and contained much evidence that she knows me too well! Suffice to say that after opening them, I right away had to use my new promarkers so I couldn't go to bed ;) here's a picture! 

Then me and my friend Stacey went to Scribbles Pottery painting studio in Newmarket. I painted a plant pot, and she painted a bunny!

Me posing with my unpainted pot!

My finished pot... Which looks like a child had painted it. Oops.

This is Stacey and her Bunny bunny bunny! 

After that we went off to spoons for some lunch (we were starvinggggg!). By then it was easily 4pm and my Ellie came to see me and brought me some lovely presents and had some cake with me and mum. 

By that point I was half asleep and really needed a nap. I was so tired that I could barely sit up and ended up asleep on the sofa. I wasn't impressed when I had to get up at 6 and get dressed for dinner. But I managed with a smile. See!

Dinner didn't initally go too well. The Chinese seamed to think that we hadn't booked and didn't have a table so we ended up at the Red Lion in a turned which was bloody gorgeous! It's really improved recently and the food I'd just so much better. I had a lonely night though, so alls well that ends well! 

I have clinic tomorrow and need to get some sleep if I'm going to get through without an admission. I shall just get up early and neb lots tomorrow before I go, so that my lungs are at least acceptable when I go for lung function. 

Anyway, I blog again soon about my appointment and the rest of my birthday! 

Buy for now,

Kirsty x

Its been ages since I last posted, but that's mainly because not a lot has happened, but at the same time - so has a lot. So in the past month, the days seem to have all merged into one long blur - a lot of which has been spent in bed!

I have managed to watch seasons 1-8 of 'Grey's Anatomy' again - in less than a month.Which kind of shows you how little I have been doing! I have also been doing a lot of crafting and have taken up journalling, it keeps me occupied and gives me something to focus on which I really appreciate :) Here are a few pictures!

This is my sock cat! I made her out of a pair of knee high welly socks, buttons, emboridery thread and lots and lots of stuffing! She wasnt too hard to make to be perfwctly honest, Its more knowing which bits to cut and sew to make the right shape. Though it is tricky trying to get the head and the tail on neatly, and in the right place - it takes some repositioning and hidden sitiching to get it looking good.

She has a long tail and and kinda sits up on her back legs, though they can be a little tempermental so she spends a lot of time just laying there. As you can see - her and Tilly are getting along well ;) I thought it was so cute when I saw her snuggled up to a giant cat shaped sock!

I have also made a cushion which was inspired to some degree by one I saw in a shop. It was twenty-odd pounds and so I decided to make my own, for no more than a few quid. I stuffed it and gave it to my nan for her birthday earlier this month, I think she liked it - I took a picture first so that I don't forget what it looks like. I am planning on making another one soon for a friend, just waiting for some felt to arrive, hers is going to be done in brights, so purples, red, yellows etc...

All of the fine detailing is done in embroidery thread, the main blocks of colour are done in felt and I have used buttons for some of the flowers. It could have been a little neater, but for the first attempt it was good enough!

I've been art journaling too! Thanks to the joys of pro-markers and stamping they have been coming out rather well and I have been getting some nice results. If i'm honest I have been just experimenting and seeing what I can do with different bits and pieces. Here are some examples...

Aside from the obvious sheer number of craft projects running simultaniously, I have also started my OU courses this month and I am really enjoying them. I have been getting a plan going each week saying what I will try to get done, most of the time I have stuck to it, but I have had a fair few days where I haven't felt up to it - but i've managed to catch up. I was sitting there reading one day, and having a neb when I realised how ironic this was...!

Nebbing and reading about COPD was rather amusing! I must be a bit of a weirdo, but it did make me giggle...! 

So far my course has been really good and I am enjoying having a purpose again. This is my time now. It's my chance to to get what I want out of my life, and I will do it, I won't let anything stand in my way...

I know that some of you like to know how my ole bagpipes are doing! Things have been rather up and down over the past month and I am in a bit of a rubbish lung phase at the moment... I have been feeling very unwell for the past five days or so, I've had a bit of a cold and naturally my lungs don't like that. I've had a fair few moments when it looked like I would have to admit defeat and head to hospital. But it's my birthday (...which is today!) weekend and I wasn't going to spend that in hospital! So I've been pushing myself to keep going.

I have managed to keep myself going with plenty of prednisolone and increased antibiotics... I normally take clarithromycin  in a modified release tablet so that I don't get too many chest infections, but I added doxycycline too the minute I felt it going to my chest! I'm also on split dose prednisolone 30mg twice a day and nebs every 2/3 hours. I still feel grotty but in the end I'm here and able to enjoy my birthday, and that's all I can ask for! 

I also managed to get an abscess and crumbly tooth.... So I am in pain. I don't do things by halves do I ?! So on top of all of the increased asthma stuff I am on amoxicillin, metronidazole and other pain meds. Here's to hoping it helps! 

Anyway, it's my bed time now - I need to sleep and ready for my birthday fun! Ill post tomorrow before bed and update!