23rd February is my PEG date so 3 weeks of worrying will now start! However, I am kind of glad its been set but i just want to worrying to be over and the road to recovery and fatness to begin!
Clinic was poop - I wasnt nervous about it as i am feeling ok chestwise although I have had a few bad bellyaches over the past couple of weeks. My weight was down to 44kg even though ive been eating *screams* and dont even get me started on my lung function!! I did 2 blows and they both didnt read on the machine for some reason...the 3rd one registered and i did a 4th one for luck but that didnt read either. So i had one result which read 21% but it was my 3rd blow and i was knackered so im not believing it :) Doctor said my chest sounded fine - yay - and then we spoke more about the PEG.
I HATE diabetes!!! I havent been told much about it so dont know how to manage it that well and im a complicated case at the moment apparantly - fantastic!! So, I have a appointment next week with the diabetes team and have to do loads of blood sugar tests everyday and write down everything I eat and the portions.
In everyday news, I have applied for Employment support which is the new benefit instead of income support, which took an hour on the phone and now waiting for them to send me stuff through the post. I really didnt want to apply as it makes me feel worse - im 21 years old and applying for benefits because im too ill to work - thats crap! Hope im only on it for a little while!!
The rest of my week has consisted of eating, lots of ironing (as my ironing draw collapsed under the weight of clothes - opps), de-cluttering my room, and sorting out my medicine cupboard. Now, as other CF sufferers know - this job took bloody hours!! Cant think of anything else to say at the moment except im excited about friday as me and my best friend Steph are off to see Legally Blonde at the theatre :) Thats twice in 1 month that ive been to the theatre now - im getting posh ;)
x Lots of love x
Tuesday 26 January 2010
Wednesday 20 January 2010
x Think positive!! x
Yay!! My iv's have finished and Lance took the needle out today and I was finally able to have a proper shower after 2 weeks which was great :)
Havent really done much in general - little bit of shopping, have been playing on the wii-fit plus and sorting out my messy room and the mountain of ironing which has built up seeing as i havent had the energy to do it what with being unwell. I did some today though and plan on doing another handful tomorrow after visiting daddy at the pub.
Oh of course the bestest news - we have finally booked a holiday!!! Woohoo im so excited i need to go now! There is 10 people going and we have all got a villa in Spain right near malaga. There is me and Scott, 2 other couples and 4 other boys who are going for the party side of things (one of them being my little brother!! haha how funny). He cant wait and he will only have just turned 18 when we go in June. Picture of the villa:
Havent really done much in general - little bit of shopping, have been playing on the wii-fit plus and sorting out my messy room and the mountain of ironing which has built up seeing as i havent had the energy to do it what with being unwell. I did some today though and plan on doing another handful tomorrow after visiting daddy at the pub.
Oh of course the bestest news - we have finally booked a holiday!!! Woohoo im so excited i need to go now! There is 10 people going and we have all got a villa in Spain right near malaga. There is me and Scott, 2 other couples and 4 other boys who are going for the party side of things (one of them being my little brother!! haha how funny). He cant wait and he will only have just turned 18 when we go in June. Picture of the villa:
Now for the main news - the PEG!!
Well Lance and Jen came round on Monday as i had agreed to have it and they told me that it may be possible to do it next wednesday....at this point, i nearly pooed myself as it was a shock that it would be that quick. We talked alot about it and most of my questions were answered but as soon as they went, i began to panic and rang and texted everyone close to me for help!! Most said it was a good thing to get it out the way but i still needed to get my head round it. However, when Lance came round today, he said it wouldnt be next week but would hopefully be within the next few weeks and that they could hopefully give me a date when I go clinic on Tuesday.
I am attempting to look at the positives at the PEG and try not to worry. I am doing it for the benefit of me, it should help in many areas of my health, and will take of lots of pressure and nagging!! I have lots i could say on the subject but i will leave it for now and try to stop thinking about it as I cant do much about it - its gonna happen so I will deal with things as they come.
x Lots of love x
Wednesday 13 January 2010
x Another BIG, unwanted decision x
Lets start on a good note shall we?
This port is bloody brilliant :) yes i did actually say that!! I didnt manage to avoid the iv's and started them a week ago today. I really wasnt well but refused to go back into hospital as i would have gone mad!! I pooed myself allday before going up to the hospital to have the needle put in because I didnt know what it would feel like and i was still healing from the operation so was worried. I put on my numbing cream which went all around the port instead of on it - typical!! I didnt feel a thing and it took 5 seconds - i was so shocked and relieved after that i cried!! Its been a week now and im starting to cough less and have more energy but i keep forgetting im on iv's as normally i am restricted in what i can do so im really happy. I suppose it was worth the pain of the operation :)
Friday, me and Scott went to see a adult puppet show called Avenue Q. He had brought me tickets for xmas. We drove upto London as i didnt want to be out in the cold too much and plus there werent many trains anyway because of the snow. It was so funny and i would recomend it as a great night out - apart from getting lost on the way home as the bloody sat-nav decided to go nutty and kept changing the route so we went round in circles 3 times but made it home finally!!
Now for the big decision - I think i have finally decided to have a PEG fitted. This is a feeding tube which goes into the stomach so that I can be feed extra calories overnight. I have done absolutly everything in my power to avoid things coming to this but i cant do it and i dont see any other options left. It has been exactly 2 years since i lost all my weight and im so fed up of worrying about food and trying so hard to make sure i eat as much as i can. I have tried NG tubes but that was so painful because of my polyps so that is no longer an option. I have tried to have as many supplements as possible even though they are horrid and ive tried megace, which increases your appetite. It will involve having another operation but hopefully only being in hospital for about a week.
I hate the thought of something sticking out of my stomach and that it is going to hurt. I am really trying to look for the positives in it so that i will get myself through it. This is a VERY big step for me and i am quite proud of myself for even considering it. I dont really know what else to say as talking about it too much lately has resulted in tears :(
Will update when there is more news to give.
x Lots of love x
This port is bloody brilliant :) yes i did actually say that!! I didnt manage to avoid the iv's and started them a week ago today. I really wasnt well but refused to go back into hospital as i would have gone mad!! I pooed myself allday before going up to the hospital to have the needle put in because I didnt know what it would feel like and i was still healing from the operation so was worried. I put on my numbing cream which went all around the port instead of on it - typical!! I didnt feel a thing and it took 5 seconds - i was so shocked and relieved after that i cried!! Its been a week now and im starting to cough less and have more energy but i keep forgetting im on iv's as normally i am restricted in what i can do so im really happy. I suppose it was worth the pain of the operation :)
Friday, me and Scott went to see a adult puppet show called Avenue Q. He had brought me tickets for xmas. We drove upto London as i didnt want to be out in the cold too much and plus there werent many trains anyway because of the snow. It was so funny and i would recomend it as a great night out - apart from getting lost on the way home as the bloody sat-nav decided to go nutty and kept changing the route so we went round in circles 3 times but made it home finally!!
Now for the big decision - I think i have finally decided to have a PEG fitted. This is a feeding tube which goes into the stomach so that I can be feed extra calories overnight. I have done absolutly everything in my power to avoid things coming to this but i cant do it and i dont see any other options left. It has been exactly 2 years since i lost all my weight and im so fed up of worrying about food and trying so hard to make sure i eat as much as i can. I have tried NG tubes but that was so painful because of my polyps so that is no longer an option. I have tried to have as many supplements as possible even though they are horrid and ive tried megace, which increases your appetite. It will involve having another operation but hopefully only being in hospital for about a week.
I hate the thought of something sticking out of my stomach and that it is going to hurt. I am really trying to look for the positives in it so that i will get myself through it. This is a VERY big step for me and i am quite proud of myself for even considering it. I dont really know what else to say as talking about it too much lately has resulted in tears :(
Will update when there is more news to give.
x Lots of love x
Friday 1 January 2010
x Piss off 2009 - here's to 2010 x
Happy New Year everyone!!
I am so glad this year is over. What a shit year (healthwise) it has been so next year has got to be better, hasnt it??
Sum up of 2009 - Went into hospital in March and also got MRSA. The drugs used to treat this gave me a big allergic reaction, which was a big rash from head to toe which lasted at least a month after the drugs stopped. Was back in hospital in June for a routine 2 week IV course. In July, my lung function dropped from in the 30's to the 20's with no real explanation. August, one of my best friends Vicky lost her long, hard battle with Cystic Fibrosis which broke my heart and still does to this day. September was another hospital admission of 3 weeks because it was a bad infection and i had to give up my great job at the nursery as it was making me ill. October finally diagnosed me with CF related diabetes. In November, I lost another close friend Anna to CF and finally, December was another hospital admission and a partly collapsed lung. Wellllll.....i think thats everything!!
Dont get me wrong I have had such good times in 2009 too. I graduated university with a 2:1, I got a new car on the disability allowance, I had a great 21st, my daddy took over a pub :) and I got fitted with a portacath, which i hope will be easier for me to have IVs and less hospital admissions!! I am also thankful that everyone I love in my family is still around and my brilliant boyfriend of nearly 4 years is still by my side and amazing as ever.
Havent really got anything more to say or i cant think of anything else lol....hoping 2010 is much better healthwise. I am trying my hardest and will continue to do so as its quite scary when you really think about things :(
x Lots of love x
I am so glad this year is over. What a shit year (healthwise) it has been so next year has got to be better, hasnt it??
Sum up of 2009 - Went into hospital in March and also got MRSA. The drugs used to treat this gave me a big allergic reaction, which was a big rash from head to toe which lasted at least a month after the drugs stopped. Was back in hospital in June for a routine 2 week IV course. In July, my lung function dropped from in the 30's to the 20's with no real explanation. August, one of my best friends Vicky lost her long, hard battle with Cystic Fibrosis which broke my heart and still does to this day. September was another hospital admission of 3 weeks because it was a bad infection and i had to give up my great job at the nursery as it was making me ill. October finally diagnosed me with CF related diabetes. In November, I lost another close friend Anna to CF and finally, December was another hospital admission and a partly collapsed lung. Wellllll.....i think thats everything!!
Dont get me wrong I have had such good times in 2009 too. I graduated university with a 2:1, I got a new car on the disability allowance, I had a great 21st, my daddy took over a pub :) and I got fitted with a portacath, which i hope will be easier for me to have IVs and less hospital admissions!! I am also thankful that everyone I love in my family is still around and my brilliant boyfriend of nearly 4 years is still by my side and amazing as ever.
Havent really got anything more to say or i cant think of anything else lol....hoping 2010 is much better healthwise. I am trying my hardest and will continue to do so as its quite scary when you really think about things :(
x Lots of love x
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