So I had a pretty successful clinic i suppose...well I didnt get moaned at so thats a good start ;)
The best news was my weight is up from 42.2kg to 44.2kg. Thats 2kg in 2 weeks wooohoooo!! I also missed a few feeds last week due to eating my main meals too late so feeling too sick and full up to start a feed so Im just going to have to plan times abit better for the next 2 weeks. My lung function stayed the same which is ok seeing as I am abit coughy so am going to work on this!
I was given a perscription for 2 nebulisers to try. I had spoken to Lance before about alternating my nebulised antibiotics so that it would help and be more effective at attacking different bugs in my chest...i tried tobi before and didnt like it so there is a weaker version called Bramitol (think thats it). I will have this for a month and then switch to Colomycin nebs for the next month. It should be next week that I go to have my first dose in hospital incase of any reactions. The other nebuliser i normally just have when im ill in hospital but they have given me some to keep at home. I only have it if im feeling wheezy as it opens your airways and is called Salbutomol.
Hope you all like my new blog layout too...took me bloody ages and involved lots of shouting and swearing at the computer and many moaning emails to a couple of other blog users for help...thank you for your help Megan and Tori :) I think it turned out quite well.
x Lots of love x
Wednesday, 28 July 2010
Sunday, 25 July 2010
X Another busy week and another holiday x
First off with the good news (there is some!! Shock horror lol): I have finally, after 6 months, been paid money for my Employment and Support Allowance. Bloody ridiculous how hard and how much proof i had to send them in order to get any money!! The next step is a medical assessment all the way up london for them to assess my illness...god knows how they are going to do this...im nervous even though it is a genuine claim!!
Other good news is that we have booked another holiday. Scott paid for it for my birthday and we booked it on friday. We are off up north to York for a week at the end of October. We are staying in a lodge which is surronded by a big lake and the doggies are coming too :) The only thing we have to sort out for them is travel pills for Buster as he gets bad travel sickness - bless him. I cant bloody wait!!
Im still reasonably well too. Am still eating fine and doing my feed so I better have put on weight on Tuesday at clinic. Mum mentioned that she thinks I have as u cant see the portacath tube in my neck as much now (this is our weight loss judge lol). I am on a 5 day course of steriods as I have a bit of a cough but its more wheezy than anything. I havent been sleeping hardly these last few days so I think it may be linked to the steriods.
I am pissed off that I didnt make it to the gym last week :(
I was suffering with 'girly' week at the start of the week which is really painful and heavy so I sulked at home, then I have been so busy sorting lots of things out, and then I was going to go after my feed was delivered but it didnt come until 3pm and its normally here by 11am so that was a wasted day! I WILL go this week!!
Nothing else to report I dont think. Will let you know how clinic goes on tuesday.
x Lots of love x
Other good news is that we have booked another holiday. Scott paid for it for my birthday and we booked it on friday. We are off up north to York for a week at the end of October. We are staying in a lodge which is surronded by a big lake and the doggies are coming too :) The only thing we have to sort out for them is travel pills for Buster as he gets bad travel sickness - bless him. I cant bloody wait!!
Im still reasonably well too. Am still eating fine and doing my feed so I better have put on weight on Tuesday at clinic. Mum mentioned that she thinks I have as u cant see the portacath tube in my neck as much now (this is our weight loss judge lol). I am on a 5 day course of steriods as I have a bit of a cough but its more wheezy than anything. I havent been sleeping hardly these last few days so I think it may be linked to the steriods.
I am pissed off that I didnt make it to the gym last week :(
I was suffering with 'girly' week at the start of the week which is really painful and heavy so I sulked at home, then I have been so busy sorting lots of things out, and then I was going to go after my feed was delivered but it didnt come until 3pm and its normally here by 11am so that was a wasted day! I WILL go this week!!
Nothing else to report I dont think. Will let you know how clinic goes on tuesday.
x Lots of love x
Sunday, 18 July 2010
x More shopping and a trip to the gym x
I took a big step for me and went to the gym for the first time in years on Thursday!! I went in the day by myself and was so nervous before that I stood outside for 5 minutes and felt ill with panic. I used to enjoy the gym with my ipod on but was so worried about breathing and coughing but I need to start somewhere! Adding up all the time spent on the machines it came to 30 minutes which I was pleased with. It doesnt sound like much to some people reading this, but under the circumstances I am pleased and so was my mummy and Scott so thats all I care about.
My breathing actually wasnt too bad and I may have been able to do more if it wasnt for my useless arms and legs which gave up on me! My limbs seized up straight away and I didnt think I would be able to drive home. Scott was home from work so I stopped off there to see him and he was watching a film upstairs. He had to push me up the stairs to help me get up there - how lovely lol :)
I plan on going twice next week - hopefully tuesday and friday - and I have made a list of what I did and hopefully I can do more and more each time and track my progress. Watch this space!!
Friday was another shopping day with mummy to get some other bits and pieces that we couldnt get in Lakeside on my birthday. It was mostly successful so I was happy and then I gave myself a night off my overnight feed so I could stay at Scotts. In the morning, we went to Scott's bosses house as he has 6 miniture sheep and they each had a baby just before we went on holiday (2 of the babies died though) so we went to see them. He lives in a expensive area where the houses are massive and little country villages. It was a hot day aswell so it was a nice trip out.
Off to write a list of more things I have to do starting tomorrow - nothing that exciting and alot of them are bloody phonecalls!!
x Lots of love x
My breathing actually wasnt too bad and I may have been able to do more if it wasnt for my useless arms and legs which gave up on me! My limbs seized up straight away and I didnt think I would be able to drive home. Scott was home from work so I stopped off there to see him and he was watching a film upstairs. He had to push me up the stairs to help me get up there - how lovely lol :)
I plan on going twice next week - hopefully tuesday and friday - and I have made a list of what I did and hopefully I can do more and more each time and track my progress. Watch this space!!
Friday was another shopping day with mummy to get some other bits and pieces that we couldnt get in Lakeside on my birthday. It was mostly successful so I was happy and then I gave myself a night off my overnight feed so I could stay at Scotts. In the morning, we went to Scott's bosses house as he has 6 miniture sheep and they each had a baby just before we went on holiday (2 of the babies died though) so we went to see them. He lives in a expensive area where the houses are massive and little country villages. It was a hot day aswell so it was a nice trip out.
Off to write a list of more things I have to do starting tomorrow - nothing that exciting and alot of them are bloody phonecalls!!
x Lots of love x
Wednesday, 14 July 2010
x Happy birthday to me x
I made it to 22!!
Sorry for saying that but its true - after the last few months I really didnt think I would make it at certain points! Anyway....
I had a great day. Didnt do alot as its not a big birthday or anything and no-one has any money lol...i got a few little pressies to open (one was scar serum lol) but I had asked for money for my 'main' pressie. So Dad gave me money and so did mummy. Scott is taking me on holiday up to Yorkshire in October with the doggies for my birthday. Its to stay in these lovely modern log cabins which have outside, heated jacuzzi things - cant wait!!
Me and mummy spent the day shopping as I havent been properly for months and havent brought any new clothes either (for obvious reasons - see previous blogs). This resulted in a 7 hour shop in Lakeside!! We got there at 1 and left at 8pm only stopping for abit of dinner for 20 minutes. I was really proud of myself and so was mummy as I wouldnt have been able to do it weeks ago. I was absolutly shattered though but i got some great clothes and other goodies :)
Tuesday was hospital check-up and everything went well, I think! My lung function and weight was the same ( 20% and 42.5kg). Now I dont need telling that both of these aint great but now that all the problems are out the way (i hope) I can work really hard on improving both of these. My chest is abit crackly but other than that doctor seemed pleased with how I have coped. I had mild panic attack when Lance and my dietician Jen turned my PEG button round. I know its not a big thing and no it didnt hurt but things like that freak me out and I was worried there would be something wrong. Lance also showed me how to check the water in the PEG balloon. He had shown me when I had it changed to the button but I was so high on sedation I dont remember!! For those who dont know - the PEG button is held in place by a balloon filled with water. Its filled with 5ml and you check it weekly to make sure its still filled up. If its not, then you put more water in. Just make sure the balloon hasnt burst (which can happen due to wear and tear or stomach acid) or the PEG tube can just fall out. I am terrified of this happening - surprise, surprise!!
Tuesday night I went out for a birthday meal with Daddy, his partner Lisa and Scott which was lovely and filling.
The hard work starts over the next few days in starting my fitness going. It is soooo hard at first to get going as it can be painful, makes me tired and breathless and cough up crap but hopefully after a while it will start to get easier, i will be able to do more and more and of course hope to see the benefits! Wish me luck as i will need it - im nervous!!
x Lots of love x
Sorry for saying that but its true - after the last few months I really didnt think I would make it at certain points! Anyway....
I had a great day. Didnt do alot as its not a big birthday or anything and no-one has any money lol...i got a few little pressies to open (one was scar serum lol) but I had asked for money for my 'main' pressie. So Dad gave me money and so did mummy. Scott is taking me on holiday up to Yorkshire in October with the doggies for my birthday. Its to stay in these lovely modern log cabins which have outside, heated jacuzzi things - cant wait!!
Me and mummy spent the day shopping as I havent been properly for months and havent brought any new clothes either (for obvious reasons - see previous blogs). This resulted in a 7 hour shop in Lakeside!! We got there at 1 and left at 8pm only stopping for abit of dinner for 20 minutes. I was really proud of myself and so was mummy as I wouldnt have been able to do it weeks ago. I was absolutly shattered though but i got some great clothes and other goodies :)
Tuesday was hospital check-up and everything went well, I think! My lung function and weight was the same ( 20% and 42.5kg). Now I dont need telling that both of these aint great but now that all the problems are out the way (i hope) I can work really hard on improving both of these. My chest is abit crackly but other than that doctor seemed pleased with how I have coped. I had mild panic attack when Lance and my dietician Jen turned my PEG button round. I know its not a big thing and no it didnt hurt but things like that freak me out and I was worried there would be something wrong. Lance also showed me how to check the water in the PEG balloon. He had shown me when I had it changed to the button but I was so high on sedation I dont remember!! For those who dont know - the PEG button is held in place by a balloon filled with water. Its filled with 5ml and you check it weekly to make sure its still filled up. If its not, then you put more water in. Just make sure the balloon hasnt burst (which can happen due to wear and tear or stomach acid) or the PEG tube can just fall out. I am terrified of this happening - surprise, surprise!!
Tuesday night I went out for a birthday meal with Daddy, his partner Lisa and Scott which was lovely and filling.
The hard work starts over the next few days in starting my fitness going. It is soooo hard at first to get going as it can be painful, makes me tired and breathless and cough up crap but hopefully after a while it will start to get easier, i will be able to do more and more and of course hope to see the benefits! Wish me luck as i will need it - im nervous!!
x Lots of love x
Wednesday, 7 July 2010
x Holiday in Malaga x
Im home and only slightly suntanned :( I dont tan - i try my best but, because I am fair, it means i go a slightly darker version of pale or i just burn!!
The holiday was great - lovely to relax around the villa and pool with friends. In the days, we didnt really do much other than spend it in the villa. We had the tv, music, the pool, my book, card games, sunbathing and eating :) Most of the nights, we stayed in but me and Scott joined the 'single' boys on 2 of their nights out which was good!! We went out for dinner most nights except for a bbq we had so I have done well with eating!
I am finally starting to feel more normal again. Its sooooo nice not to have the tube hanging out of me, being able to wear most of my clothes, even though I am not completely happy with how I look as im still underweight. No worries though, my appetite is good and I have started doing my overnight feeds since being home, so onwards and upwards. I am nervous about what my lung function will be at the next clinic though. I havent done it since before my operation in April and im worried all the problems ive had have affected it. However, I am now in a good position to start hitting the exercise again and WILL go to the gym next week!!
I am a positive little person at the moment and just really hope that the last few shitty months are behind me and the 2nd half of the year is a better one. This will start tomorrow with me taking a trip to the hairdressers with mummy and planning my birthday celebrations - yay!!
x Lots of love x
The holiday was great - lovely to relax around the villa and pool with friends. In the days, we didnt really do much other than spend it in the villa. We had the tv, music, the pool, my book, card games, sunbathing and eating :) Most of the nights, we stayed in but me and Scott joined the 'single' boys on 2 of their nights out which was good!! We went out for dinner most nights except for a bbq we had so I have done well with eating!
I am finally starting to feel more normal again. Its sooooo nice not to have the tube hanging out of me, being able to wear most of my clothes, even though I am not completely happy with how I look as im still underweight. No worries though, my appetite is good and I have started doing my overnight feeds since being home, so onwards and upwards. I am nervous about what my lung function will be at the next clinic though. I havent done it since before my operation in April and im worried all the problems ive had have affected it. However, I am now in a good position to start hitting the exercise again and WILL go to the gym next week!!
I am a positive little person at the moment and just really hope that the last few shitty months are behind me and the 2nd half of the year is a better one. This will start tomorrow with me taking a trip to the hairdressers with mummy and planning my birthday celebrations - yay!!
x Lots of love x
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