Me and me best mate Steph went on a little trip to Tunbridge Wells on Friday night to go and see Sally Morgans show. She is one of the top psychics and I have seen her programmes on sky over the past year. Before her, I had been very weary of psychic stuff but she says things that no-one could possibly guess or know. The show started at 7.30pm and lasted for 2 hours but it went sooooo quick and i could have sat there all day listening to her.
I didnt get a message from anyone which was a shame but im not disappointed. We are looking to go again as it was a great night out. We laughed, cried and got chinese on the way home :)
Tuesday was hospital clinic. Since i only finished my iv's on thursday, i didnt expect my lung function to be amazing, and it wasnt, it was down. I know this sounds strange as I had just finished iv's but its normal for me. It takes me about a week after iv's to start feeling 'normal' and thats when my lung function picks up as i am able to get out and about more. My weight was up to 47.7kg so i am so pleased as it means im only about 2kg away from my target!! My feeds are going well since the peg change (they were fine before and will be fine after but i just worried that they wouldnt be!!). Ive also started some garlic tablets that I brought from Boots. I have heard alot about garlic and that it can help pseudo (a CF bug), so thought it was worth a try!
This week i have been so busy, ive only just managed to fit in writing this blog! We are finally off on holiday on Saturday - me, Scott and the doggies - to Yorkshire. We are staying 2 miles away from York city centre. I have been rushing around - well as fast as i can possibly go lol - sorting things out like the sat nav which i havent updated since i got it 3 years ago...i didnt even realise you had to update it which is highly stupid of me as roads and places are changing all the time!! Ive made space on the camera and camcorder, had to wait in for deliveries, and had to sort buster out some travel pills as he gets bad car sickness - bless him. I got my suitcase down last night and have just started sorting out my medication...i am surronded by tablets, feed and nebs...its like a walking pharmacy! Im off now to do the fun bit which is sorting out my clothes, alhough I hope i dont have to do too much ironing!!
Will be away for a week but will have my phone on me so may update the blog halfway through the week from our lodge!! :)
x Lots of love x
Thursday 28 October 2010
Friday 22 October 2010
Changing my PEG button
For those not medically minded let me explain a few things about a peg button. My peg tub is 3cm long inside and then finishes with a balloon filled with water on the end. This water balloon is what holds it in my stomach and if anything happens to it and the balloon goes down, it has the potential to fall out of your stomach. If this happened to me, i promise you, i would be on the floor with it!! You have to check the water levels every week and the maximum it can be is 5ml. When i checked it on monday, it was only 1ml, so i filled it back up again. Soon after, I felt water in the hole of my stomach and my belly was damp around it. It bothered me all night so tuesday morning, i checked it again and it had gone back down to 2ml.
It took me an hour and a half to pluck up the courage to ring Lance and Jen as I knew what they would say. I had to come in to have my peg changed as they believed there may have been a leak somewhere. I was going up to the hospital on thursday to finish iv's anyway so we agreed to do it then. Until thursday, I put tape over my peg incase more water leaked out the balloon and tried not to think about it.
Thursday I just sat there all morning not talking, i could hardly eat and had a dodgy stomach - all of these were nerves. Me and mum went up the hospital for 3pm . I was a mess. I cried like a baby, was shaking lots and had to fight hard to control my breathing as i had what only can be described as a mini panic attack and found my breathing going way too fast that i nearly passed out. I wasnt allowed anything to calm me down. Other people can be given entinox (laughing gas) but because i had a partly collapsed lung when i had my port put in, entinox can make it more likely to happen again. Lance took down the balloon, took it out, put the other new one in and then filled the balloon up. Was done quickly but it did sting. I dont know if that is because its the first time ive had it changed?? It bled alittle afterwards but nothing drastic and when he took it out, belly juice came out too...ewwww!!
I fell asleep as soon as i got home and went to bed early as i was shattered. Am up bright and early today but am staying indoors to do jobs and then its the weekend!! woohoo!!
x Lots of love x
It took me an hour and a half to pluck up the courage to ring Lance and Jen as I knew what they would say. I had to come in to have my peg changed as they believed there may have been a leak somewhere. I was going up to the hospital on thursday to finish iv's anyway so we agreed to do it then. Until thursday, I put tape over my peg incase more water leaked out the balloon and tried not to think about it.
Thursday I just sat there all morning not talking, i could hardly eat and had a dodgy stomach - all of these were nerves. Me and mum went up the hospital for 3pm . I was a mess. I cried like a baby, was shaking lots and had to fight hard to control my breathing as i had what only can be described as a mini panic attack and found my breathing going way too fast that i nearly passed out. I wasnt allowed anything to calm me down. Other people can be given entinox (laughing gas) but because i had a partly collapsed lung when i had my port put in, entinox can make it more likely to happen again. Lance took down the balloon, took it out, put the other new one in and then filled the balloon up. Was done quickly but it did sting. I dont know if that is because its the first time ive had it changed?? It bled alittle afterwards but nothing drastic and when he took it out, belly juice came out too...ewwww!!
I fell asleep as soon as i got home and went to bed early as i was shattered. Am up bright and early today but am staying indoors to do jobs and then its the weekend!! woohoo!!
x Lots of love x
Monday 18 October 2010
Dehydration....we think!
I think the mystery of the headaches has been solved thanks to my amazing friend Gemma :) She mentioned that it could be dehydration, as you can get more dehydrated whilst on iv's, which sounded like a good theory as it was only headaches in the morning. I have been making sure i drink more water during the day, take lots of water to bed with me and i havent been too bad so it must of been that! Thanks mate! Cant wait for these iv's to finish on thursday...soooo bloody annoying and tiring keep having to do them.
Had a tiring weekend. Friday was a trip to Rainham to see one of my friends as I havent seen her since we went on holiday in June. There was 6 of us. We all went out for a chinese and then back to Debbie's flat after stopping at the shop for alcohol (for the boys) and snacks (for me!!). We stuck a films on and everyone started to fall asleep one by one until it was me, Jack and Carlton still awake. I enjoyed watching them sit there chatting rubbish as they continued to get more and more drunk...good times :) Saturday morning everyone was up for mcdonalds breakfast and then we left by half 12 in the afternoon. I went to see my dad up the pub and watch the footie. Sunday was another early morning as I went to watch Scott play football which i enjoy but its starting to get pretty cold!
Today I did nothing as i was so tired from the weekend. It was quite a busy weekend but it was made more tiring because it involved late nights and early starts. Today i have done little jobs and made millions of 'to-do' lists as we go on our holiday in 11 days.
x Lots of love x
Had a tiring weekend. Friday was a trip to Rainham to see one of my friends as I havent seen her since we went on holiday in June. There was 6 of us. We all went out for a chinese and then back to Debbie's flat after stopping at the shop for alcohol (for the boys) and snacks (for me!!). We stuck a films on and everyone started to fall asleep one by one until it was me, Jack and Carlton still awake. I enjoyed watching them sit there chatting rubbish as they continued to get more and more drunk...good times :) Saturday morning everyone was up for mcdonalds breakfast and then we left by half 12 in the afternoon. I went to see my dad up the pub and watch the footie. Sunday was another early morning as I went to watch Scott play football which i enjoy but its starting to get pretty cold!
Today I did nothing as i was so tired from the weekend. It was quite a busy weekend but it was made more tiring because it involved late nights and early starts. Today i have done little jobs and made millions of 'to-do' lists as we go on our holiday in 11 days.
x Lots of love x
Thursday 14 October 2010
What are my headaches??
So since starting my iv's thursday i have woken up everyday with immense headaches. I have a few theories but none really make sense. I did think it may be 'lack of oxygen' headaches. However, i am not breathless at all and am breathing well actually. When im sitting up or standing up, my head is ok but when i lie my head down, it hurts so i dont think its my chest. This means ive been tired most of the day and been having naps early afternoon. When i have these naps, my headaches dont happen, its just in the mornings, so i really dont understand it. I did think it may be the iv's as it started when they did, but i have them 3 times a day and im fine for the rest of the day. Hmmmmm.....
Tuesday was a visit to the cemetery as it should have been Vickys 22nd birthday. I always think about her anyway but she has been on my mind alot lately.
Since switching back to my old feed at the start of the week, things have been fine and i used my portable bit of the pump and my backpack to stay at scotts last night. It was great and Scott seemed highly amused at how excited i was about using it for the first time - i am easily amused ;)
I just weighed myself at home and have hit 48kg and i think the scales are roughly the same as the hospital so im soooooo pleased! It is the heaviest i have been since losing all my weight nearly 3 years ago now. I am on my own tonight and so shed a little tear of happiness. Im nearly at my target!!!
x Lots of love x
Tuesday was a visit to the cemetery as it should have been Vickys 22nd birthday. I always think about her anyway but she has been on my mind alot lately.
Since switching back to my old feed at the start of the week, things have been fine and i used my portable bit of the pump and my backpack to stay at scotts last night. It was great and Scott seemed highly amused at how excited i was about using it for the first time - i am easily amused ;)
I just weighed myself at home and have hit 48kg and i think the scales are roughly the same as the hospital so im soooooo pleased! It is the heaviest i have been since losing all my weight nearly 3 years ago now. I am on my own tonight and so shed a little tear of happiness. Im nearly at my target!!!
x Lots of love x
Sunday 10 October 2010
Feed tastes rather horrid!
How do I know this? Because I had my first full 1000ml overnight on friday night and woke up in the morning feeling dreadful and promptly threw it all back up again! Nice! We have come to the conclusion that this type of feed is too rich for me and doesnt agree so Im switching back to my old feed.
In feeding pump news (because i know how funny you all think my pump situation is!) I have another new one! I had a lady come over on Friday to train me for a new type of pump which is smaller and you can take a section of it off to make it portable which will be great for me. You also can have a little backpack with the pump so you can move about wearing it and dont have to stay stuck in bed or in the chair whilst having it - im so excited and will clearly be the height of fashion in my backpack lol :) The lady took my old pump which actually broke the night before (i dont know if this is fate or just another thing sent to annoy me!) so I am now on my 4th pump since February. It may possibly be a record.
In other health news, Im tired alot at the moment and still eating but not massive amounts as normal. My iv's are having the usual side effects by making my balance off and I keep swaying and getting little bits of dizziness. Now I am constantly falling over anyway so add these iv's into the mix, and i am constantly walking around like a pissed person much to the amusement of Scott and mummy. Oh and I got my diabetes result over the phone on Friday too. The results should be between 3-7 but mine were 15 - so yeah, im diabetic. However, i need to check my blood sugars closly for a while before they give me anymore insulin as CF-related diabetes is complicated so I will be monitored for a while.
All in all not a great past few days - too much CF stuff and too much feeling like absolute poop so I forced myself to go out last night to a 21st birthday party with loads of Scotts mates and their girlfriends. I was feeling abit better by the evening but really had to make the effort to get ready and keep smiling. I am so glad I went thou, it was a brilliant and really funny night - i got to talk to some of my good mates, laughed alot at drunken dancing, saw a few arguements, danced (and i thought i danced quite well even in my 'pissed' state) and then finished it off with stop off on the way home (in my car with a full load of hammered boys) at the chicken shop! Good times :)
x lots of love x
In feeding pump news (because i know how funny you all think my pump situation is!) I have another new one! I had a lady come over on Friday to train me for a new type of pump which is smaller and you can take a section of it off to make it portable which will be great for me. You also can have a little backpack with the pump so you can move about wearing it and dont have to stay stuck in bed or in the chair whilst having it - im so excited and will clearly be the height of fashion in my backpack lol :) The lady took my old pump which actually broke the night before (i dont know if this is fate or just another thing sent to annoy me!) so I am now on my 4th pump since February. It may possibly be a record.
In other health news, Im tired alot at the moment and still eating but not massive amounts as normal. My iv's are having the usual side effects by making my balance off and I keep swaying and getting little bits of dizziness. Now I am constantly falling over anyway so add these iv's into the mix, and i am constantly walking around like a pissed person much to the amusement of Scott and mummy. Oh and I got my diabetes result over the phone on Friday too. The results should be between 3-7 but mine were 15 - so yeah, im diabetic. However, i need to check my blood sugars closly for a while before they give me anymore insulin as CF-related diabetes is complicated so I will be monitored for a while.
All in all not a great past few days - too much CF stuff and too much feeling like absolute poop so I forced myself to go out last night to a 21st birthday party with loads of Scotts mates and their girlfriends. I was feeling abit better by the evening but really had to make the effort to get ready and keep smiling. I am so glad I went thou, it was a brilliant and really funny night - i got to talk to some of my good mates, laughed alot at drunken dancing, saw a few arguements, danced (and i thought i danced quite well even in my 'pissed' state) and then finished it off with stop off on the way home (in my car with a full load of hammered boys) at the chicken shop! Good times :)
x lots of love x
Thursday 7 October 2010
x My m.o.t x
My m.o.t aka annual review day was today. Lots of different things are done today and i will try and remember them all so bear with me!!
I wasnt allowed to eat from midnight last night for 2 reasons - the ultrasound and glucose test. I was up early for me at 7am and had to be at the hospital for half 8. I had my port needle put in and dressing put on as it was agreed that i would have 2 weeks of iv's as my cough has got worse, my appetite was starting to go, and was getting more tired easily. See - im being a good girl and not leaving iv's until the last minute as i dont want all my hard work to slip back.
I had loads of blood taken from my port which filled about 15 different tubes and then i had to drink a glucose drink. The drink is to check for diabetes as i am borderline diabetic. Over the past year, i have only had high blood sugars when i get ill so im not fully diabetic yet and just take insulin when needed. The test involves taking blood after fasting, then drinking the glucose drink (which is so sickly)all in one go, waiting 2 hours and then taking blood again. If the results are higher than 7, then its positive for diabetes and i should get results tomorrow.
I also had a chest xray and ultrasound. I was rushed through to both as i saw one of the memebers of staff that i knew and they took me straight in :) I was nervous about the ultrasound as they look at all the organs and i still dont like people touching my scars yet but the woman was really good and avoided them. Also had the usual weight, lung function tests which were down from last week alittle but it was early in the morning and im not well so im not fussed. I did get out of my physio test though as i just started iv's and they only do it when you feeling ok.
We got out of there by half 12 and headed straight for asda to pick up some sandwiches. This is my new food faze - cheese and onion sandwiches from asda or marks and spencer. I got home and ate that with a big glass of coke and then promptly fell asleep for just over an hour.
I also met a girl called Lauren today. My friend spoke to me and told me about her and i have been speaking to her most of the night. Her best friend passed away a year ago aged 17 from CF, and so she is now raising money for the CF trust by treking for 9 days across the great wall of china!! Im so jealous as i would love to do it, however my body hates me so wouldnt let me and i dont like flying so wouldnt even make it to china!! haha xx You have plenty of time to donate money or support to her as its not until May 2011 but that will give you time to save your pennies and give them to her :) Will keep you all updated nearer the time!!
>>> www.justgiving.com/Laurenod <<< THE LINK
x Lots of love x
I wasnt allowed to eat from midnight last night for 2 reasons - the ultrasound and glucose test. I was up early for me at 7am and had to be at the hospital for half 8. I had my port needle put in and dressing put on as it was agreed that i would have 2 weeks of iv's as my cough has got worse, my appetite was starting to go, and was getting more tired easily. See - im being a good girl and not leaving iv's until the last minute as i dont want all my hard work to slip back.
I had loads of blood taken from my port which filled about 15 different tubes and then i had to drink a glucose drink. The drink is to check for diabetes as i am borderline diabetic. Over the past year, i have only had high blood sugars when i get ill so im not fully diabetic yet and just take insulin when needed. The test involves taking blood after fasting, then drinking the glucose drink (which is so sickly)all in one go, waiting 2 hours and then taking blood again. If the results are higher than 7, then its positive for diabetes and i should get results tomorrow.
I also had a chest xray and ultrasound. I was rushed through to both as i saw one of the memebers of staff that i knew and they took me straight in :) I was nervous about the ultrasound as they look at all the organs and i still dont like people touching my scars yet but the woman was really good and avoided them. Also had the usual weight, lung function tests which were down from last week alittle but it was early in the morning and im not well so im not fussed. I did get out of my physio test though as i just started iv's and they only do it when you feeling ok.
We got out of there by half 12 and headed straight for asda to pick up some sandwiches. This is my new food faze - cheese and onion sandwiches from asda or marks and spencer. I got home and ate that with a big glass of coke and then promptly fell asleep for just over an hour.
I also met a girl called Lauren today. My friend spoke to me and told me about her and i have been speaking to her most of the night. Her best friend passed away a year ago aged 17 from CF, and so she is now raising money for the CF trust by treking for 9 days across the great wall of china!! Im so jealous as i would love to do it, however my body hates me so wouldnt let me and i dont like flying so wouldnt even make it to china!! haha xx You have plenty of time to donate money or support to her as its not until May 2011 but that will give you time to save your pennies and give them to her :) Will keep you all updated nearer the time!!
>>> www.justgiving.com/Laurenod <<< THE LINK
x Lots of love x
Tuesday 5 October 2010
No more drink for me!
So thursday and friday was fairly busy as I had loads of little errands and jobs to do and one of these involved picking up Scotts fifa 11 playstation game. So all weekend I was abandoned for football on the computer - thanks Scott, love u too ;)
Saturday was my daddys birthday so saturday night they hired a dj up my dads pub and we spent the night up there. Me and my bro brought him his usual shortbread biscuit tin and toblerone chocolate and also got him the new ireland rugby top which he loved. Also that night I decided (because for once in my life I didn't have to drive and wasn't on ivs or oral antibiotics) to have a drink. Now let's look at a few factors:
1-i haven't had an alcoholic drink since last year sometime
2-i am very small and thin
3-i drink magners cider
These three things meant that after 2 and 1/2 magners I was gone and then promptly needed my bed. It was a great night though and everyone said I looked well but by half 2 in the morning me and my bro got home. Mum was on nights and wanted to make sure I wasn't home on my own. Now this sounds silly I know, I'm 22 years old and should be able to spend the night on my own but I think I know why she hates it. I had that bad allergic reaction to iv's one night when she was working (this was all in an older blog post in about june I think) and I was rushed in an ambulance to hosp and also the nightmare time I had with my peg tube and being sick through the night. All this has lead to her panicing about me and things seem to hit her hard after the event has happened, which is now.
Sunday I woke up late on the sofa still fully dressed. I felt horrid! I didn't have a hangover but I was knackered and my mouth was like sandpaper. This is why I don't drink! I feel ill a lot of the time anyway so why put myself through the pain and tiredness the next day!! Lol. I coped well the rest of the day though and managed to get back up the pub to watch the football at 4. Everyone else had massive hangovers so we all ordered dominos and chinese to the pub but everyone agreed it was a great weekend.
In health news I'm not feeling great at the moment. I have been coughing more and then I woke up monday and it felt like someone had been sitting on my chest while I slept. It took me until about just after lunchtime to get moving after I had done nebs, meds and taken painkillers. Managed to do my room and stay at scotts and today I'm not as bad but my cough is still there and my apettite is getting less and less so I'm starting oral antibiotics tomorrow so I hope they help or it will be iv's before holiday. I've been doing really well so don't want it to slip!! Got my hospital m.o.t on thursday so will post about that with lots of info but it will be a tiring day which starts bright and early at the hosp for half 8 - great one!!
X Lots of love x
Saturday was my daddys birthday so saturday night they hired a dj up my dads pub and we spent the night up there. Me and my bro brought him his usual shortbread biscuit tin and toblerone chocolate and also got him the new ireland rugby top which he loved. Also that night I decided (because for once in my life I didn't have to drive and wasn't on ivs or oral antibiotics) to have a drink. Now let's look at a few factors:
1-i haven't had an alcoholic drink since last year sometime
2-i am very small and thin
3-i drink magners cider
These three things meant that after 2 and 1/2 magners I was gone and then promptly needed my bed. It was a great night though and everyone said I looked well but by half 2 in the morning me and my bro got home. Mum was on nights and wanted to make sure I wasn't home on my own. Now this sounds silly I know, I'm 22 years old and should be able to spend the night on my own but I think I know why she hates it. I had that bad allergic reaction to iv's one night when she was working (this was all in an older blog post in about june I think) and I was rushed in an ambulance to hosp and also the nightmare time I had with my peg tube and being sick through the night. All this has lead to her panicing about me and things seem to hit her hard after the event has happened, which is now.
Sunday I woke up late on the sofa still fully dressed. I felt horrid! I didn't have a hangover but I was knackered and my mouth was like sandpaper. This is why I don't drink! I feel ill a lot of the time anyway so why put myself through the pain and tiredness the next day!! Lol. I coped well the rest of the day though and managed to get back up the pub to watch the football at 4. Everyone else had massive hangovers so we all ordered dominos and chinese to the pub but everyone agreed it was a great weekend.
In health news I'm not feeling great at the moment. I have been coughing more and then I woke up monday and it felt like someone had been sitting on my chest while I slept. It took me until about just after lunchtime to get moving after I had done nebs, meds and taken painkillers. Managed to do my room and stay at scotts and today I'm not as bad but my cough is still there and my apettite is getting less and less so I'm starting oral antibiotics tomorrow so I hope they help or it will be iv's before holiday. I've been doing really well so don't want it to slip!! Got my hospital m.o.t on thursday so will post about that with lots of info but it will be a tiring day which starts bright and early at the hosp for half 8 - great one!!
X Lots of love x
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