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Very late post about November 2013!

So, update part two, rather late I know! But as I said I would finish filling you in on what's been going on with me, so I will pick up where I left off... Which would be around the 22nd November when I was visiting my friend in Leeds.

Just to fill you in, and make a lot of this make more sense, I should probably mention that mine and Emma's get together's are normally blighted by some sort of tragedy. For example... Emma's first visit to mine was the weekend my dad had his accident, and so she spent ages sitting in waiting rooms for me. Then I went to see Emma, and she decided to dislocate her knee the day before and not be able to walk properly. Then she came to me... I was unwell this time and we had to cancel going to the Olympics! These are just a few examples - there have been many more.

My adventure started off the night before my little journey began, and I spent what felt like ages trying to get all of my bits packed and ready.Its been a while before I last had to pack up all my medical bits for a trip away, and I was surprised at just how much rubbish I have managed to accumulate... the first picture is of most of the bits I had to take for the weekend,  I think I changed the bag I was using about three times before I decided what I was using. But I eventually decided on these two...

So the plan was to get a taxi to the bus and then get on the bus which would take me to the station, where the assistance  people would meet me. But apparently the universe wanted me to get this visits disaster over with quickly, because I read the time on my ticket wrong, and didn't have enough time to get to the station. Thankfully my Dadeh came to the rescue and took me - much speedier than the bus! But then, after all of that I still missed the train because the accessibility man wasn't there! Though, they were great, helpful and sorted everything out for me so the rest of the journey went really well! I even managed to leave my bags in the office during a change over and go and get a drink from costa. Very impressed by my christmas cup! It was the first time that I have actually had one...

So, once I had arrived at Emma's we got a taxi to hers and unpacked my stuff before going to get the things we needed for dinner. I met her dead fish, and her housemates. Poor fishie, obviously heard I was coming and decided that he wanted to go see Nemo, rather than put up with me! We then had some very yummy fajitas for dinner, before going to see SCOUTING FOR GIRLS!!

They were really good, and we had an amazing view. I should have taken more pictures really, but I was far too busy watching them, and being disgusted at the cost of a drink. Two archers and lemonades cost me £13! Can you believe it?! £13!

That was our view - the first one was mid song and the second picture was after the gig when the band came to say goodbye etc - they bowed a fair few times so I had plenty of chances to get a good shot!

The rest of the weekend was pretty good too! Consisted of lots of TV, Nandos and the cinema!! We went to a cute little tea shop too - proper saucers and glass bottles of coke! Look!

Oh, and we met a doctor who will henceforth be known as the frosties doctor. Cause she obviously got her doctorate from a cereal packet...

That's about it. I'll finish off 2013 with a post about December soon! Must catch up before I get told off!

Catch up, part one.... (Ikea, caffeine and power tools.)

So since the last post I have had a couple of really great days out, and a fair few days recovering in bed! It's been lovely to spend find some time with my friends; even if it does take a lot out of me, the main thing is that I enjoy it. I just think that it is better to have 3 really great days, followed by a few days of increased discomfort/illness - than 6 days of feeling bored, uncomfortable and ill! 

I had a great trip to Ikea and the range with my friend Ellie, who is also a crafty person! We managed to get quite a few things that we wanted and many things that we had no idea we wanted, and needed to complete our lives! It was a long day though, and so Ellie pushed me around Ikea in a chair so that I didn't have to walk... 

As you can see, I had some sexy wheels for the day! Ellie seamed to spend vast quantities of the day telling me off for trying to wheel myself around though. I thought I could give it a go - but the myopathy seams to be
killing my once bulging biceps (... okay maybe not bulging) and it made it look like Ellie had been torturing me all day and leaving me to fend for myself ! Which she had secretly, cause shes really mean! We also went and had a little look around Costco, in the hope that we would find some bargains (I wanted a giant tub of flying saucers!) but to no avail. We left empty handed, and with our dreams of it being an Aladdin's cave full of yummy treats dashed. Or sorrow didn't last long though, and we managed to pull ourselves out of our deep hole of disappointment to go and buy unnecessary, yet much coveted, craft supplies. Muhahahahaa!

We then finished the day with Starbucks and an all you can eat Chinese buffet! I'm not normally a hot drinks person, but I was cold and in need of caffeine so I had a yummy latte. I was also impressed that not only did the lady in Starbucks write my name without asking, she even spelt it correctly! By the time we had finished it was easily 8pm and I was starving, generally I don't view all you can eat buffets as a challenge, however what with me being so hungry it probably looked like that to anyone around. It was a most welcome end to a lovely day.

Then, later that week I went to see my dad, and we somehow managed to build a kitchen. Well, not the whole kitchen - that would be beyond impressive, but we moved doors around and put them on cupboards etc. Dad even let me loose with power tools, and no, I didn't break anything (or anyone)! It just goes to show that you can do anything you want if you put your mind to it, and it also shows that even with only one working hand, my dad can do a better job than most can with two. Makes me very proud to be able to call him my dad.

Also, my dolls house is coming along nicely. Its all painted and has its windows fitted... My skills know no boundaries. I can fit kitchens, windows and even build houses. I also have a newly assembled 'tool kit' which contains a fair few items which I think make me significantly more dangerous than I previously was... Such as a hacksaw and various types of craft knives!

My friend Stacey also successfully beat off numerous other candidates to get a job working in a local primary school. Obviously I am very, very proud of her and think that she will do a great job - so I treated her to some of my famous home cooking, fake champers and some prezzies! Well done Gavy,  go get 'em!


















Anyways, this is the end of part one! Only because I'm too lazy to finish writing the rest ;)

Take care,
Kirsty x

Sooo... Since my last post very little of any interest has happened! I'm home and trying to get back to some sort of routine, but it's taking time and effort to get there! 

I've recently managed to buy a Cuttlebug second hand, off a friend of a friend and I'm enjoying it far too much!! It's really hard work to turn the handle, cause I'm all pewney and weak! But look! Cuttlebug! 

I gave an interview for Allergy UK, where I spoke about the effects of indoor allergens on my asthma the other week. Was rather nervous - but it went well, and the resulting podcast seams to have got some good comments. It's also gone onto YouTube! Here's the link if you want to check it out...

http://bit.ly/1hzpeAy

Don't forget to comment and let Allergy UK know that it's actually been worth the effort!

There's been some sad news too, my best friends bunny, Jasper died. It was very quick, he picked up an infection which caused septicemia , and died later that day. Poor Jasper. He was a lovely bunny and we will miss him lots. 

I have been working on my dolls house a lot, and it's looking really good. The windows are all in, the roof tiles are on and painted and I just need to do the chimney and the outside will be finished. I'm very pleased with it so far - I can't wait to start sorting the inside, it won't be long till I'm ready to do that :) 

I've also managed to discover that I can watch season 9 of Greys Anatomy on love film! It's very sad how exctited it made me, but I actually watched the whole thing in a couple of days. Oh, and now I can't cope with the whole waiting for season 10 thing. It's driving me nuts. But, season 9 was amazing, and there were many moments which made me go 'Ahh', 'Eeeeeeep!' and 'Awhhh' - there were times which led to this being posted on my timeline...

Yes... I'm that sad.

Tuesday was clinic. It was a monumentally frustrating as normal and as usual, I left wanting to either kill myself, or someone else... I'm not sure which option, but I was close to carrying one of them out! My consultant has seemed to have forgotten about just about everything we had discussed before... He wasn't supposed to be messing around with things, but leaving them as they were until Heartlands see me and letting them decide what to do! But then considering he doesn't even seam able to read the BASIC things about me... Like the fact that I'm diabetic and that he's failed numerous times to get me off steroids, and it's not worked... I cant expect too much.

On the positive side, my lung function was around 65%, which is about 10% better than last time, and my ENO was better too. My GP is also sorting out my pain management, which has been great, it's meant that I can actually get comfy at night and get some sleep. 

I don't think there's much more to say! I'll update soon when I actually have something exciting to add.

Take care,

Kirsty x

  

So, I've been home about a week since my last admission. Unfortunately the second half of the admission was just as much of a shambles as the first! They carried on making silly mistakes regarding my care, some of which were boardering on dangerous! Still managed to pull some silly faces though!! 

Rocking the 'sticking my tounge out' pose! 

So after the night of the aminophyline drama, we gradually reduced it and took me off of it. Unfortunately that night it all went boobies up, and I splatted spectacularly! Around 10pm they had to call the on call reg, cause my sats were around 85% on 8L and I sounded like a pair of out of tune bagpipes. He came along and gave me more magnesium, hydrocortisone and aminophyline - and stabbed me for numerous ABGs until he gave up and admitted that he wouldn't be able to get one!! Then along came the critical care team who wasn't impressed by the lack of ABG and wanted to try. Thankfully he told them that he wasnt going to keep stabbing me. 

Things went okay after that. I got better and was so excited when I managed to get my O2 down to a blue valve! Annoyingly they were very rushed and did their best to discharge me ASAP. To the point where I had only been off 02 for an hour or so, and off of amino for about 12 hours. Not that I'm complaining about getting out quickly - but some discharge planning wouldn't have gone a miss, because they managed to discharge me with the wrong medication etc.

In other news, my course is going well, and I've managed to get between 80 and 90% in my past two assessments! Which makes me feel better about it all - at least it's not all going right over my head! Rather worried about some of the other assessments, but I will just cross that bridge when I come to it and hope for the best. 

I've also started a dolls house! Stacey got me one for my birthday and I've been working on it - it's all put together and the decorating of the outside is next on the cards :) Tilly seams to like it too and has taken residence in the living room...

 

Bless her! She does look very cute in there though, and it's turned into her hidey-hole for when fireworks go off...!

Me and Stacey had an evening at the cinema the other day, watching Bad Grandpa. Was the funniest film I've seen in ages - and the night ended in nandos and the purchasing of a Eeyore onesie, a good night over all! 

Oh and Emma sent me some pretty amazing socks! I love them :) They are also really comfy too, all soft and cosy. We keep an exchange of letters/prezzies and postcards going between us, so it won't be long until I send Emma's - just got to finish it off - I wont say what's in it incase she reads this and it spoils the surprise! 

I'm gonna go now, starting to nodd off and I really need to sleep! Take care -

Kirsty. 

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! 

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