Ive been to the cinema twice since my last post: last Sunday we saw Harry Potter which Scott got very excited about as he loves it, and this week we saw London Boulevard. They were both good films!!
In health news: Im still doing ok, my chest seems fine and my weight seems to be holding. Over the last week, I have been finding eating difficult...i am hungry but just dont know what i feel like having! I hope I find something soon as im annoying myself!! My little lungs DO NOT like this weather. Everytime I go outside, the sudden cold air and change in temperature makes me cough and sends my lungs into a little hissy fit. I still want it to snow though...it sounds like every part of the UK has snow except us in London but it is promised for this week - yay!
I also had a family outing to the doctors for a flu jab (fun times) which i didnt even feel this year, didnt get a dead arm and didnt have any side effects...i personally think i didnt feel it as i am fatter this year so have more meat on my arms lol :) I went back down the doctors for an appointment to sort out my prescription as there are things missing off of it that should be on it and it was driving me mad. He sorted it in 5 minutes so now i have a prescription with 22 different items on it. He finally did my referral letter to get me on a fitness scheme at my gym so that I can go for cheaper because I need to go for health reasons. It means i can go whenever I want so dont have to worry too much about money as its only £11 a month. Now just have to ring the gym tomorrow to say i have the referral and will hopefully be able to start it in the new year.
Ive done all my online xmas shopping now and still have a few things to be delivered but the things that I have got, ive wrapped up all neatly. Im off to the shops next week with my friend Steph to get more pressies, cards and bits and pieces. I love buying people pressies and try to put alot of thought into them. Im so excited...its only a month away now!!!
Today was a year today since my friend Anna lost her battle with CF. It seems like ages ago and I miss talking to her everyday. We used to have such a giggle online and she was an amazing person to know.
I have a busy start to the week ahead so will update once I sit down!!
x Lots of love x
Sunday, 28 November 2010
Monday, 22 November 2010
x Diabetes clinic x
I had an appointment at the diabetes clinic with Jen my dietician to have a talk about what the hell my body is doing with the insulin and we still dont really know!! As far as i can make out....I definatly have CF related diabetes because my sugars are not in the 'normal' ranges of 4-7. However, when I have been testing them they havent been drastically high - i think the highest was about 10, however, its more a case of them being low. This is not because i havent been eating...for example, after a meal at the carvery with a glass of coke, 2 hours after my sugars were only 2.7, and the other night at the start of my feed my sugars were 9.6 (after a bowl of cereal and mars bar before bed) and after my feed finished at 3am, they went down to 8.5. Even CF patients without diabetes sometimes have to take insulin with feeds but mine went down after having it?? Why is my body so bloody complicated lol!!
The result of this is an appointment in January to fit a constant blood glucose monitor. This is a small tube (like a cannula/venflon) thats put into my belly (my poor little belly is taking alot of trauma this last year lol) and will stay there for about 4 days. It has a memory in it so that it can see what my blood sugar levels are doing for 24 hours a day. I really didnt want it but it is the only way we can see a true picture of whats happening and hopefully get some answers. If diabetes is not treated, it can cause issues with putting on weight and increased chest infections - both of which i am trying to improve!!
Tuesday night was brilliant. Me and Scott went for a meal with our other couple mates Sirin and Carlton. We havent seen them in a while and ended up staying out for about 4 hours in the pub/restaurant talking about old times and really laughing. I have done alot of my shopping online these last few days and have got alot more ideas for stuff and have planned a big shopping day to Lakeside with Steph in a few weeks to get pressies and bits and bobs so cant wait!!
Friday I had a bad day - just feeling tired and coughing with a sore chest. These days always worry me but i try and think that everyone has bad days so if i just allow myself to rest and sort myself out the next day. I stayed at home all day and mum had the day off so we made my high calorie muffins. The 1st attempt went wrong and i made some mixture that strongly looked like scrambled egg so mummy chucked it in the sink...the 2nd attempt went well and even though it took me 2 and half hours from start to finish, i finaly have something that resembles muffins :D
After, I was so tired so fell asleep and then loaded up on KFC to boost my calories as i didnt do well with eating that day either. Hopefully the weekend will be a good one.
x Lots of love x
The result of this is an appointment in January to fit a constant blood glucose monitor. This is a small tube (like a cannula/venflon) thats put into my belly (my poor little belly is taking alot of trauma this last year lol) and will stay there for about 4 days. It has a memory in it so that it can see what my blood sugar levels are doing for 24 hours a day. I really didnt want it but it is the only way we can see a true picture of whats happening and hopefully get some answers. If diabetes is not treated, it can cause issues with putting on weight and increased chest infections - both of which i am trying to improve!!
Tuesday night was brilliant. Me and Scott went for a meal with our other couple mates Sirin and Carlton. We havent seen them in a while and ended up staying out for about 4 hours in the pub/restaurant talking about old times and really laughing. I have done alot of my shopping online these last few days and have got alot more ideas for stuff and have planned a big shopping day to Lakeside with Steph in a few weeks to get pressies and bits and bobs so cant wait!!
Friday I had a bad day - just feeling tired and coughing with a sore chest. These days always worry me but i try and think that everyone has bad days so if i just allow myself to rest and sort myself out the next day. I stayed at home all day and mum had the day off so we made my high calorie muffins. The 1st attempt went wrong and i made some mixture that strongly looked like scrambled egg so mummy chucked it in the sink...the 2nd attempt went well and even though it took me 2 and half hours from start to finish, i finaly have something that resembles muffins :D
After, I was so tired so fell asleep and then loaded up on KFC to boost my calories as i didnt do well with eating that day either. Hopefully the weekend will be a good one.
x Lots of love x
Monday, 15 November 2010
Too much going on in my head!!!
Im surronded by lists yet again...my usual to-do list, ideas for xmas pressie list, pressies that i have brought list, what i want for xmas list....argh!!! I keep having to tell myself that i dont have to rush about for xmas as i have plenty of time, but i never know what is gonna happen in my life and i dont want to have to worry about pressies incase i do get a chest infection or anything. I know thats abit of a negative way to think but im just being realistic!! I offically started my xmas shopping on saturday evening as that was my first online purchase done - yay!! Im not going to mention what pressies i have brought people on here as i know certain people read this and i like people to be surprised :) However, any ideas as for what to buy Scott would be welcomed (just email me on facebook or something) as all he keeps going on about is a damn 3d television which is abit out of my price range thank you very much lol!!
Also sitting next to my lists is court papers. This was what greeted me when i got back from York. Im not going to go on about it as im too angry to even start speaking about it again but basically i appealled their decision to put me in the 'back to work' group as i dont need help getting work, its a case of me not being well enough to work. They are now saying that i have to go to court to take my case furthur because they believe that i am well enough to attend the meetings for the 'back to work' group. They sent me the criteria information as to who qualifys to be in the other group, and to put it bluntly, you have to be practically a vegetable! But can you tell me what the point is, of going to these meetings to help me back to work if im not well enough to go to work. They totally agree that im not well enough to work but their claim is that i am well enough to attend the meetings....please tell me what the point is in that?? Isnt that wasting mine and their time??
Tuesday i went clinic and my lung function had increased upto 24% and it WILL continue to increase!! My weight increased by 0.1kgs but we were all happy with that as i had done lots of exercise on holiday and not had too many feeds but, in the words of Tesco - every little helps :D We are still trying to sort out my diabetes as sometimes i have high blood sugars and sometimes they plummet so its too dangerous for me to have insulin at the moment until its sorted out as i dont want to end up in a diabetic coma!! Ive got to monitor my blood sugars all through-out the day until my appointment on tuesday...this results in me attempting to prick my finger about 3am when my feed finishes...great one!!
I have also now made up my mind that i strongly dislike one of my doctors even more after this clinic. When i had all the probs with my peg, she did nothing and didnt listen to me in any way, just kept throwing anti-sickness and heartburn medicine at me...and we all know now that the sickness and burn was because the tube was lodged in my bowel...anyway, i havent seen her properly since, until this clinic. She knows how nervous i am about anything to do with my peg (for obvious reasons), although i am getting better and dont check every few hours anymore to see if its still there!! She felt my stomach and was pushing over my scars, which im funny about people touching and then without warning just turned my peg all the way round really fast which pissed me off bigtime!! Then she was checking all my tablets and asked if i was still getting heartburn and if i was still on anti-sickness....erm no!!! I havent been on them since may and it wasnt fucking heartburn or reflux, it was the bastard peg tube...how many more times!!!
I also have a reciepe for muffins...not normal muffins...1000 calorie muffins!! I went out and brought all the ingredients before the weekend and then decided to make them today but realised i didnt have a muffin tin...and i still dont have a muffin tin, because i brought a yorkshire pudding tin instead. I thought they were the same but apparently not (the muffin tins are deeper) so im sulking and refusing to go out again so will now make them tomorrow afternoon instead.
God...this was a long post wasnt it!! That will teach me to leave it a week to update!
x Lots of love x
Also sitting next to my lists is court papers. This was what greeted me when i got back from York. Im not going to go on about it as im too angry to even start speaking about it again but basically i appealled their decision to put me in the 'back to work' group as i dont need help getting work, its a case of me not being well enough to work. They are now saying that i have to go to court to take my case furthur because they believe that i am well enough to attend the meetings for the 'back to work' group. They sent me the criteria information as to who qualifys to be in the other group, and to put it bluntly, you have to be practically a vegetable! But can you tell me what the point is, of going to these meetings to help me back to work if im not well enough to go to work. They totally agree that im not well enough to work but their claim is that i am well enough to attend the meetings....please tell me what the point is in that?? Isnt that wasting mine and their time??
Tuesday i went clinic and my lung function had increased upto 24% and it WILL continue to increase!! My weight increased by 0.1kgs but we were all happy with that as i had done lots of exercise on holiday and not had too many feeds but, in the words of Tesco - every little helps :D We are still trying to sort out my diabetes as sometimes i have high blood sugars and sometimes they plummet so its too dangerous for me to have insulin at the moment until its sorted out as i dont want to end up in a diabetic coma!! Ive got to monitor my blood sugars all through-out the day until my appointment on tuesday...this results in me attempting to prick my finger about 3am when my feed finishes...great one!!
I have also now made up my mind that i strongly dislike one of my doctors even more after this clinic. When i had all the probs with my peg, she did nothing and didnt listen to me in any way, just kept throwing anti-sickness and heartburn medicine at me...and we all know now that the sickness and burn was because the tube was lodged in my bowel...anyway, i havent seen her properly since, until this clinic. She knows how nervous i am about anything to do with my peg (for obvious reasons), although i am getting better and dont check every few hours anymore to see if its still there!! She felt my stomach and was pushing over my scars, which im funny about people touching and then without warning just turned my peg all the way round really fast which pissed me off bigtime!! Then she was checking all my tablets and asked if i was still getting heartburn and if i was still on anti-sickness....erm no!!! I havent been on them since may and it wasnt fucking heartburn or reflux, it was the bastard peg tube...how many more times!!!
I also have a reciepe for muffins...not normal muffins...1000 calorie muffins!! I went out and brought all the ingredients before the weekend and then decided to make them today but realised i didnt have a muffin tin...and i still dont have a muffin tin, because i brought a yorkshire pudding tin instead. I thought they were the same but apparently not (the muffin tins are deeper) so im sulking and refusing to go out again so will now make them tomorrow afternoon instead.
God...this was a long post wasnt it!! That will teach me to leave it a week to update!
x Lots of love x
Thursday, 28 October 2010
Sally Morgan is truely amazing x
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
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
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
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