Well I had a fantastic time in London. Highlights of it were seeing where Anne Boleyn and Catherine Howard's execution took place (Tower Green) and where they are buried along with others such as Lady Jane Grey so I could pay my respects. It was actually quite emotional since I'm a big fan of Anne Boleyns.
We saw original portraits of all Henry's wives, children, parents and himself of course. We saw letters written by Henry himself including the love letter to Anne Boleyn, letters by Anne Boleyn and her book of prayers, letters by Wolsey, the letter Thomas Cromwell wrote to Henry begging to save his life (which he didn't) and many more. I can't emphasise how much in awe I was, I was gutted I couldn't take pictures in the Library but knowing I was that close to these things was enough. I saw Henry's armour at the Tower which again I couldn't take pictures of, but I did manage to sneak one in!
Hampton Court was great too, the building is magnificent. You can't even begin to appreciate it when you see it on TV or in pictures. They had actors pretending to be Henry and Katheryn Parr (his last wife) which was good fun, I even got nervous when I had my picture taken with Katheryn!
Pete and I also had fun in the evening, we got abit merry in our travelodge room, which was a good job really as our room was situated right next to a train track!
I was so tired today, all that walking around and getting the tube etc (the tube is evil, so many steps!) plus the extremely warm weather has really run me down but it was worth it. I managed not to burn as I wore plenty of suncream, adding to the lovely stickiness of sweating and the crusty dried salt which covered me ......! (people with cf have more salt in their sweat).
I've put together a video of my trip, hope you enjoy it!
By the way I have a youtube channel now, I keep adding all kinds of stuff. Youtube is designed for people like me who like wasting time.... :o)
http://www.youtube.com/user/missisGG
Tuesday, 30 June 2009
Saturday, 27 June 2009
Wahoo!
Had outpatients today. my weight is down slightly at 55.4kg but nothing major, sats 96% and my fev1 is still 46%! Also my fvc is slightly up!
The last time I had IV's was in March so I am doing really well. I've actually booked myself to have some IV's in August if this good period continues (fingers crossed). The reason I have booked them is so I am well for my wedding and honeymoon but I need to make sure I leave a few weeks before the wedding for my arm to heal if it goes manky, I don't want a red arm for my wedding! Aug is only 6 weeks away so I don't need to go for an outpatients appointment in between. When I was arranging this I was surprised at how close the wedding is! So now I'm panicking abit! Its 11 weeks! Yikes!
I told the physio I had broken my acapella mouthpiece (abit of plastic snapped off so now its really sharp) and asked her for a replacement. She gave me a whole new acapella, apparently noone has ever asked for a replacement mouthpiece. Must just be me then that bites it! I also asked her to call respironics about my I-neb as I am sick of having to ring them for replacement disks, they are supposed to send me a supply every month but they never do! I run out and then have to use the old school porta neb and the tobi takes over half an hour to go through. She said respironics are been abit funny about patients not having promixin through the i-neb (they make promixin or something) and using tobi so they make no money. Well they shouldn't have agreed in the first place then!
The doctor filled in my form to have oxygen on the plane and I told her about my headaches. She isn't referring me to and ENT specialist as the headaches aren't all the time, they just come every so often. She said some antibiotics should reduce the pain as its infection building up and is common if you have psuedomonas especially in this type of weather. She has given me Doxycycline to take which is apparently good for the sinuses. I've never had it before so we shall see. I have finally finished Ciprofloxcin and Voriconazole and now I'm on this and guess what it says on the front 'AVOID THE SUN'! Grrr!!!!!
Pete and I are going to London tomorrow on our Henry VIII trip, can't wait! Just put some fake tan on my legs so I can wear a dress since it's going to be warm!
Here are pictures of the invites. The first one is for the whole day, second one for the evening reception and the final is the inside of an evening reception invite (I had to hide some bits, don't want everyone to know my address!)
Thursday, 25 June 2009
The Key
I had a weird dream the other night. I love recording them to remind myself of my weirdness! Dreams are just so silly you can't help but try and understand them and read something into such random images your head has put together!
In this dreams a couple who I don't recognise (I remember the woman was slim and tall and had long, very straight hair) came to a house I lived in to have a look around. They then gave me a small plastic plant pot with some soil in and left. I decided to plant something in this plant pot and was moving the soil around and found a copper key in it. My friend was with me and we were debating as to whether we should keep the key and pretend we never found it or return the key but then the people would know we knew about it and we suspected they might not like that we knew about this key.... we had a sense they were dodgy characters. Then a policeman came into the house and joined in the discussion, I know who this policeman was, it wasn't a random made up policeman. He said we should return the key and left.
We decided to ignore his advice and keep the key because we didn't like the policeman very much. My friend left to get the car and came back so we left the house to get in the car. Except she had parked it all the way at the other side of the cul-de-sac so I was shouting at her calling her an idiot and they were going to catch us. We were walking very fast to the car and my heart was pounding, I could see the car at the other side of a bush parked on someone elses drive.
The I saw my friends boyfriend in a car looking at us and I realised he wanted the key and he started driving at us really fast. My friend tried to climb over the bush and was doing this weird action with her arms over and over again, almost as if she were in a film and the dvd had got stuck. I just walked around the bush and got in the passengers seat then was waiting for her but she kept doing this action, trying to scurry over the top of the bush. Her boyfriend crashed into the bush and then I woke up......!
Very strange....
Can you believe my headache has still not gone? It's getting abit silly now. The optician doesn't think it's my new contact lenses but has told me to try my new ones for a week then my old ones for a week and see if there is any difference. He also took some pictures of my eye which they do if people complain of headaches. My mum delivered me some more painkillers this morning as my I could barely move my head when I woke up this morning and I had to have all he curtains shut when I got up. Its feeling better now but still there grrr!
I'm going to put up pictures of my wedding invitations next week, maybe Saturday as I'm posting the last ones today so then I can reveal them! I hope you are impressed with them!
In this dreams a couple who I don't recognise (I remember the woman was slim and tall and had long, very straight hair) came to a house I lived in to have a look around. They then gave me a small plastic plant pot with some soil in and left. I decided to plant something in this plant pot and was moving the soil around and found a copper key in it. My friend was with me and we were debating as to whether we should keep the key and pretend we never found it or return the key but then the people would know we knew about it and we suspected they might not like that we knew about this key.... we had a sense they were dodgy characters. Then a policeman came into the house and joined in the discussion, I know who this policeman was, it wasn't a random made up policeman. He said we should return the key and left.
We decided to ignore his advice and keep the key because we didn't like the policeman very much. My friend left to get the car and came back so we left the house to get in the car. Except she had parked it all the way at the other side of the cul-de-sac so I was shouting at her calling her an idiot and they were going to catch us. We were walking very fast to the car and my heart was pounding, I could see the car at the other side of a bush parked on someone elses drive.
The I saw my friends boyfriend in a car looking at us and I realised he wanted the key and he started driving at us really fast. My friend tried to climb over the bush and was doing this weird action with her arms over and over again, almost as if she were in a film and the dvd had got stuck. I just walked around the bush and got in the passengers seat then was waiting for her but she kept doing this action, trying to scurry over the top of the bush. Her boyfriend crashed into the bush and then I woke up......!
Very strange....
Can you believe my headache has still not gone? It's getting abit silly now. The optician doesn't think it's my new contact lenses but has told me to try my new ones for a week then my old ones for a week and see if there is any difference. He also took some pictures of my eye which they do if people complain of headaches. My mum delivered me some more painkillers this morning as my I could barely move my head when I woke up this morning and I had to have all he curtains shut when I got up. Its feeling better now but still there grrr!
I'm going to put up pictures of my wedding invitations next week, maybe Saturday as I'm posting the last ones today so then I can reveal them! I hope you are impressed with them!
Monday, 22 June 2009
Happy Birthday Alfie!
Alfie is two years old today! Happy Birthday Alfie! He got a little squeaky toy from us :o) Although he seems to more interested in what the builders behind us are doing!
This headache is starting to get me down, I have a feeling it might be stress although I don't feel that stressed. The trouble with me is that I think about things over and over again in my head and worry about stupid little things, I could never survive having a stressful job! I have no idea how I survived at university! The reason I think it is stress is it is constant but not really bad, just there all the time. It feels like pressure pushing on my head, its almost as if all my thoughts are wanting to burst out of my brain, I really need to learn how to chill out. Its stopping me wanting to cough which isn't good and I dread everytime I have to do my physio as it makes it worse. The pain is also behind my eyes which makes me think it might be the new contact lenses I have been given as I started wearing them last Wednesday and that's when the headaches seemed to start, I'm going for an eye test today so might mention it.
Here is a picture of Alfie and I next to a sculpture at the park, we thought this sculpture was rather rude! Or is that just us been dirty minded....?! Also see the woman with the child? About 1 minute later she gave me the dirtiest look because I told her child not to stroke my dog, not my fault Alfie doesn't like strangers poking him! She must want her child to lose a finger! Nah just kidding Alfie's not that bad!
This headache is starting to get me down, I have a feeling it might be stress although I don't feel that stressed. The trouble with me is that I think about things over and over again in my head and worry about stupid little things, I could never survive having a stressful job! I have no idea how I survived at university! The reason I think it is stress is it is constant but not really bad, just there all the time. It feels like pressure pushing on my head, its almost as if all my thoughts are wanting to burst out of my brain, I really need to learn how to chill out. Its stopping me wanting to cough which isn't good and I dread everytime I have to do my physio as it makes it worse. The pain is also behind my eyes which makes me think it might be the new contact lenses I have been given as I started wearing them last Wednesday and that's when the headaches seemed to start, I'm going for an eye test today so might mention it.
I have been rather stressed over the wedding invitations. Loads of people have been getting notes from the post office saying they have to pay £1.17 and go and collect it. I can't understand this as some people are getting them delivered fine and I have measured and weighed the invitations and they fit within the measurements they state on the royal mail website for one stamp to be required. I'm worried people won't go and collect them and people are going to be annoyed they had to go and collect it. I am seriously not impressed with Royal Mail for messing up my perfect invitations!
I watched the film The Curious Case of Benjamin Button on Saturday, it was OK, I got abit upset at the end but the first hour dragged if I'm honest. I may have only got upset because it was about 11pm and I was tired and I become emotional when I'm tired!
On Sunday Pete, my brother and I took the dogs for a walk around the Yorkshire Sculpture Park. Luckily I don't seem to have got burnt, I did wear a jacket most of the time and my big sunglasses. I finished my course of ciprofloxin on Saturday, it seems to have helped my chest abit so will see how I do at outpatients on Friday. Sunday evening Pete and I went to the cinema to see Transformers Revenge of the Fallen, it was really good! I remember I was impressed with the first one, although I couldn't really remember what happened. I think the second one is better, the main guy is really funny. I have a question though, why do they have to make the main female character behave and look like she is featuring in soft porn? Oh thats right, because young boys like Transformers ... hehe. Before anyone says it, no I am not jealous of her, I don't want to look like a porn star thank you very much lol! I enjoyed it and there is plenty of action and some bits when they kill other transformers are bit gross, yes I know they are not people dying but still, its not nice to say it's a 12A.
Here is a picture of Alfie and I next to a sculpture at the park, we thought this sculpture was rather rude! Or is that just us been dirty minded....?! Also see the woman with the child? About 1 minute later she gave me the dirtiest look because I told her child not to stroke my dog, not my fault Alfie doesn't like strangers poking him! She must want her child to lose a finger! Nah just kidding Alfie's not that bad!
Thursday, 18 June 2009
Flight Test part 2
Well I received a nice letter this morning informing me I needed to call the doctor as my flight test was borderline. My oxygen level in the blood sample fell from 9.5 to 7.1, a value of less than 6.6 means you definitely need oxygen and between 6.6 and 7.4 means borderline. He said it would depend on if my flight was long haul or short haul to whether I would need oxygen.
Since I am going to Thailand I wasn't holding much hope!
So it turns out the lady lied at the flight test, she said I'd be fine. Peh!
I have contacted Emirates and oxygen is free (I checked this before we booked just incase), they have sent me a form to fill in which I have to send back a month before we fly. The form looks abit complicated! There is a part the doctor has to fill in so I'll take it to outpatients next week.
I guess there are positives and negatives to needing oxygen:
+We will get to sit at the front so have extra legroon
+I will get my own air supply so less likely to breathe in any bugs etc in the air
+I will feel more refreshed and less tired at the end of the flight
+The air attendants might be extra nice to me
-I wont exactly look sexy at the start of our honeymoon
-I have never needed oxygen before in my whole life so have no idea how anything works
-Its an extra worry when checking in etc
I have felt abit groggy these past few days. On Tuesday morning I felt randomly sick and thought I might pass out, I laid down for half and hour and it went away. How random!
Then yesterday I developed a headache which seems to have carried on into today, not very impressed!
The physio three times a day hasn't really worked out, my sputum also seemed to get better so I didn't bother trying to pursue it. However it now seems to be all thick again, oh joy!
The front tyres on my car seem to be going bald so I took the car to Kwik Fit yesterday, they have ordered me in some new ones and are going to call me when they get them in. On motability you get 2 free tyre replacements and you have to take the car to Kwik Fit to get them replaced. I always get nervous going as I think they are going to think I'm an idiot, but i think I sounded like I knew what I was talking about yesterday. The guy seemed to take me seriously anyway!
Since I am going to Thailand I wasn't holding much hope!
So it turns out the lady lied at the flight test, she said I'd be fine. Peh!
I have contacted Emirates and oxygen is free (I checked this before we booked just incase), they have sent me a form to fill in which I have to send back a month before we fly. The form looks abit complicated! There is a part the doctor has to fill in so I'll take it to outpatients next week.
I guess there are positives and negatives to needing oxygen:
+We will get to sit at the front so have extra legroon
+I will get my own air supply so less likely to breathe in any bugs etc in the air
+I will feel more refreshed and less tired at the end of the flight
+The air attendants might be extra nice to me
-I wont exactly look sexy at the start of our honeymoon
-I have never needed oxygen before in my whole life so have no idea how anything works
-Its an extra worry when checking in etc
I have felt abit groggy these past few days. On Tuesday morning I felt randomly sick and thought I might pass out, I laid down for half and hour and it went away. How random!
Then yesterday I developed a headache which seems to have carried on into today, not very impressed!
The physio three times a day hasn't really worked out, my sputum also seemed to get better so I didn't bother trying to pursue it. However it now seems to be all thick again, oh joy!
The front tyres on my car seem to be going bald so I took the car to Kwik Fit yesterday, they have ordered me in some new ones and are going to call me when they get them in. On motability you get 2 free tyre replacements and you have to take the car to Kwik Fit to get them replaced. I always get nervous going as I think they are going to think I'm an idiot, but i think I sounded like I knew what I was talking about yesterday. The guy seemed to take me seriously anyway!
Tuesday, 16 June 2009
Jewellery Galore!
Yesterday I designed the table names for the wedding, lets just say they have a Tudor theme, come on people what else could they have been?!
Anyway during my research (I have to get it right!) I found a blog about Anne Boleyn. Well you can imagine how excited I was! You can imagine how much more excited I was when there was a link to get necklaces like the one Anne Boleyn wore but with the choice of having your own initial. Wahoo! I emailed the lady about delivery to the UK and I couldn't sleep last night for the excitement, I actually dreamt about me wearing this necklace!
I know at this point you are all thinking I am some kind of freak, and I admit that my obsession also frightens me. However we all have our little weird obsessions, this is mine. I confess and yes I know it is weird and unexplainable!!
Anyway she can deliver it to me so I have ordered it, I am so excited! I hope it is a good as it looks in the picture! There are some other really nice pieces of jewellery copied off Anne off the Tudors series. If this necklace is good I might order another! Funds permitting of course!
Talking about jewellery, I am wearing my Nana's old pearls for my wedding. the jewellers called me today and they have restrung them, cleaned the pearls and the clasp and made them the right size to fit me. My Nana is also buying me some pearl earrings to match, she is a very nice Nana! I'll chose those when I collect the necklace. I am going to look so gorgeous on my wedding day with my pearls everywhere! (there are also pearls on my dress and veil). I was discussing my wedding with my mate today and he laughed at me when I said my wedding was going to be brilliant because I will be the centre of attention all day, well it's true!! I'm so vain haha :o)
Anyway during my research (I have to get it right!) I found a blog about Anne Boleyn. Well you can imagine how excited I was! You can imagine how much more excited I was when there was a link to get necklaces like the one Anne Boleyn wore but with the choice of having your own initial. Wahoo! I emailed the lady about delivery to the UK and I couldn't sleep last night for the excitement, I actually dreamt about me wearing this necklace!
I know at this point you are all thinking I am some kind of freak, and I admit that my obsession also frightens me. However we all have our little weird obsessions, this is mine. I confess and yes I know it is weird and unexplainable!!
Anyway she can deliver it to me so I have ordered it, I am so excited! I hope it is a good as it looks in the picture! There are some other really nice pieces of jewellery copied off Anne off the Tudors series. If this necklace is good I might order another! Funds permitting of course!
Talking about jewellery, I am wearing my Nana's old pearls for my wedding. the jewellers called me today and they have restrung them, cleaned the pearls and the clasp and made them the right size to fit me. My Nana is also buying me some pearl earrings to match, she is a very nice Nana! I'll chose those when I collect the necklace. I am going to look so gorgeous on my wedding day with my pearls everywhere! (there are also pearls on my dress and veil). I was discussing my wedding with my mate today and he laughed at me when I said my wedding was going to be brilliant because I will be the centre of attention all day, well it's true!! I'm so vain haha :o)
Monday, 15 June 2009
I'm a Vampire
I have spent most of the weekend doing our wedding invitations, also is it worrying that I cannot for the life in me remember what I did on Friday?! The lady has sent us the invitations for the daytime but we haven't received the evening ones yet. So on Saturday night we spent all night printing off instructions to go with the invites, filling in the gift list cards and printing off the inserts for the invitations with the actual wording on. This took forever as getting the margins right etc was difficult and after lots of practice prints we finally were finished by about 9.30pm, it doesn't help when your printer has a mind of it's own! I think if I hadn't been drinking some wine alongside this task I could have become quite stressed!
Then on Sunday we snuck into Pete's work to use the guillotine to cut the paper inserts to the right size. I then spent the afternoon gluing them into the invitations, putting everything in envelopes and writing the envelopes. By the end of the day I was sick of folding, gluing and writing! There was stuff all over the floor surrounding this poor girl feeling rather flustered and warm! Pete got off lightly as he went to watch the rugby, don't worry I left him some to do when he got back but I ended up helping him anyway!
I will post a picture of my invitations but I haven't sent them yet and so don't want to spoil the surprise for people who will be receiving one and read this blog!
I also took the dogs for a walk with my mum and brother who is back from university for the summer now and my mum is back from her holiday. My mums suitcase got lost and my Twilight book was in there! Luckily they found the suitcase and returned it on Saturday, panic over!!
Talking of brothers, my other brother decided to book a club 18-30's holiday with all his mates. He came around for tea on Wednesday with my dad and told us he was going on the 7th September for a week, Pete, my dad and I just looked at him. Our wedding is on the 11th September!! Can you believe it?! Luckily they had only paid the deposit and they have managed to rearrange it over the weekend, this is typical behaviour of my brother, he is so slack sometimes!!!
Alfie has had a funny tummy again, when I was at the dog training the trainer suggested natural yogurt so we bought him some which luckily he agreed to eat and it worked a treat. Within half an hour he was in the garden barking and running around like a nutcase!
This warm weather is abit depressing, because I'm on ciprofloxcin and voriconazole I will burn really easily, infact my hands are looking horrible at the moment, they are all leathery like an old woman's, also my ears are peeling and are sore. Therefore I am like a vampire, staying out of the sun. I am not moaning about the sun, just that I can't go in it....!
Then on Sunday we snuck into Pete's work to use the guillotine to cut the paper inserts to the right size. I then spent the afternoon gluing them into the invitations, putting everything in envelopes and writing the envelopes. By the end of the day I was sick of folding, gluing and writing! There was stuff all over the floor surrounding this poor girl feeling rather flustered and warm! Pete got off lightly as he went to watch the rugby, don't worry I left him some to do when he got back but I ended up helping him anyway!
I will post a picture of my invitations but I haven't sent them yet and so don't want to spoil the surprise for people who will be receiving one and read this blog!
I also took the dogs for a walk with my mum and brother who is back from university for the summer now and my mum is back from her holiday. My mums suitcase got lost and my Twilight book was in there! Luckily they found the suitcase and returned it on Saturday, panic over!!
Talking of brothers, my other brother decided to book a club 18-30's holiday with all his mates. He came around for tea on Wednesday with my dad and told us he was going on the 7th September for a week, Pete, my dad and I just looked at him. Our wedding is on the 11th September!! Can you believe it?! Luckily they had only paid the deposit and they have managed to rearrange it over the weekend, this is typical behaviour of my brother, he is so slack sometimes!!!
Alfie has had a funny tummy again, when I was at the dog training the trainer suggested natural yogurt so we bought him some which luckily he agreed to eat and it worked a treat. Within half an hour he was in the garden barking and running around like a nutcase!
This warm weather is abit depressing, because I'm on ciprofloxcin and voriconazole I will burn really easily, infact my hands are looking horrible at the moment, they are all leathery like an old woman's, also my ears are peeling and are sore. Therefore I am like a vampire, staying out of the sun. I am not moaning about the sun, just that I can't go in it....!
Thursday, 11 June 2009
Flight Test
I had my flight test today, I was abit nervous because a) I didn't really know where to go and b) I was scared they would say I needed oxygen.
Turns out the thing I needed to be nervous about was actually having a bloody appointment! I asked ages ago about a flight test and was told they would book me one for June/July, I never heard anything so at my last appointment I asked about it again and someone rang me up to say she had booked me one for the 11th June. She then called back about 10 minutes later saying I already had one booked for the 20th July. I said I thought this was abit late to arrange oxygen if required, I will have alot of stuff to arrange in August so I don't want to add to the list!
I received 2 letters with both dates asking me to confirm the appointments so I called up and told a different lady that I was going to the one on the 11th. She was not happy, she had booked the other one for me and basically said I was having it too soon and why did I ask for another one? I explained noone had told me she had booked me one and it didn't leave me enough time anyway, I explained I was getting married bla bla. Anyway she said 'fine go on Thursday' and hung up on me!!!!! How rude!!
So I turned up today and they had no record of me apart from my appointment on the 20th July. The guy called the ward and spoke to the rude lady (I could tell it was her) and she denied she had anything to do with it! He didn't tell me this but I gathered it from his side of the conversation. He then spoke to the other lady who had changed it for me originally (who is very nice) and then she was passed through to someone else.
In the end they agreed they could fit me in, thank goodness!!!!
When you have a flight test they put some gel on your ear for 10 minutes and it heats up your ear so it bleeds more. They then cut it which yes it does hurt abit, and collect some blood from it, my ear bled like crazy and I got blood all down my neck and on my chest!! They put the blood in this machine, it sucks it out of the tube which is quite cool. It then gives them some numbers that I don't understand.
They then put a monitor on your finger to measure your stats and then attach you to some oxygen and you have to wear the mask for about 20 minutes. During this 20 minutes they deliver you lower %;s of oxygen as what would happen on a flight. My stats were 95% at the beginning and the lowest they dropped to were 89%.
After 20 minutes they cut your ear again and take some more blood and then remove the oxygen until your stats have returned to normal.
She said I won't need oxygen as stats falling to 85% is when they start recommending it. That's it for the test and yeay I passed!!
Turns out the thing I needed to be nervous about was actually having a bloody appointment! I asked ages ago about a flight test and was told they would book me one for June/July, I never heard anything so at my last appointment I asked about it again and someone rang me up to say she had booked me one for the 11th June. She then called back about 10 minutes later saying I already had one booked for the 20th July. I said I thought this was abit late to arrange oxygen if required, I will have alot of stuff to arrange in August so I don't want to add to the list!
I received 2 letters with both dates asking me to confirm the appointments so I called up and told a different lady that I was going to the one on the 11th. She was not happy, she had booked the other one for me and basically said I was having it too soon and why did I ask for another one? I explained noone had told me she had booked me one and it didn't leave me enough time anyway, I explained I was getting married bla bla. Anyway she said 'fine go on Thursday' and hung up on me!!!!! How rude!!
So I turned up today and they had no record of me apart from my appointment on the 20th July. The guy called the ward and spoke to the rude lady (I could tell it was her) and she denied she had anything to do with it! He didn't tell me this but I gathered it from his side of the conversation. He then spoke to the other lady who had changed it for me originally (who is very nice) and then she was passed through to someone else.
In the end they agreed they could fit me in, thank goodness!!!!
When you have a flight test they put some gel on your ear for 10 minutes and it heats up your ear so it bleeds more. They then cut it which yes it does hurt abit, and collect some blood from it, my ear bled like crazy and I got blood all down my neck and on my chest!! They put the blood in this machine, it sucks it out of the tube which is quite cool. It then gives them some numbers that I don't understand.
They then put a monitor on your finger to measure your stats and then attach you to some oxygen and you have to wear the mask for about 20 minutes. During this 20 minutes they deliver you lower %;s of oxygen as what would happen on a flight. My stats were 95% at the beginning and the lowest they dropped to were 89%.
After 20 minutes they cut your ear again and take some more blood and then remove the oxygen until your stats have returned to normal.
She said I won't need oxygen as stats falling to 85% is when they start recommending it. That's it for the test and yeay I passed!!
Wednesday, 10 June 2009
I am Invincible
Poor Vicky is still in hospital, I'm not going to go into all the details but things are really tough for her. It just seems to be one thing after another, she has been in there over 6 months now. Poor little lady, thinking of you Vicky!
Call me selfish but when these bad things happen to others with CF it makes you think about your own CF. I don't like to think of myself as having CF, I know I have it and jeez I'm reminded everyday from all the treatments and feeling like rubbish but I see that as just been me and not really fitting into a category. For me, not doing these things would be great but also abit weird!
When terrible things happen to others with CF it kind of doesn't sink in that this could happen to me, somehow I see myself as different. I don't see myself as special or better, I don't think it's denial as I don't deny I have CF and I know it's going to happen to me at some point, although I hope it's no time soon.
A girl called Laura from the CF forums passed away the other day, I didn't even know she was that ill. Is that because she didn't know herself? Was she like me and though it would work out? I'm always quite positive and think I'd push through if my health went downhill. Although I am an ill person I don't actually see myself as ill, I see myself as me with a few (well alot) of extra needs and problems :o)
I don't feel scared or worried, I feel like everything will be OK for me. How can I feel like this when people I know pass away and are poorly? I think I would be scared if one of my very close CF friends passed away as I think they see things like I do, think they are invincible. But thinking that doesn't mean that you are, and that might hit me if one of them left me.
Sometimes my attitude scares me, people keep saying maybe I shouldn't get pregnant as it could seriously make me ill or even kill me, even the doctor has warned me. However these comments seem to go unnoticed in my mind and I think to myself, I'll be OK, it will be worth it. Don't worry I'm not trying to get pregnant at this moment in time, don't want my mother ringing me up! Come on people I shall do it properly and be married first!! haha.
So to conclude, I think I am invincible, I will be OK. This is how I go about my daily business without crumpling into a ball and crying. When I do die I shall remind myself of this blog entry and it will make me laugh!!!
I have started attempting to do my physio three times a day, this is easier said than done! I am coughing up so much sputum and its really sticky and thick, I feel so full of the stuff its the only option I can think of. But like I say easier said than done, it's hard to fit it in if you have things planned and it's hard to force yourself to do it because as you can imagine it is not the most enjoyable of activities I can do on a daily basis!!
I went swimming on Monday night, first time in three weeks. Yes yes I know I am naughty! Pete has now joined the gym too and he was watching me as the treadmills over look the swimming pool. Therefore I had to look cool and like I knew what I was doing, this must have brought out a competitive streak in me and I was racing other swimmers. Yes you read that correctly. Needless to say my legs felt like jelly by the end, I still managed 30 lengths though so I was pretty impressed. I did manage to leave my swimming cap there so I'll have to buy a new one as I assume someone will have nicked it, goodbye rainbow coloured swimming cap! I'll miss you!
As well as discovering I can swim faster than about 2 other people (haha) I have discovered I can still run, but only for about 5 seconds before collapsing. The dogs on their walk decided to run to the car in the carpark across the field so I panicked as it is close to the road and legged it after them. I suspected that they may have seen another dog which is code red situation with a road close by! They are evil dogs that want to kill me, however when I got there they were both sat by the car waiting to get in. Evil for making me run.... but good and clever doggies for sitting by the car :o)
Call me selfish but when these bad things happen to others with CF it makes you think about your own CF. I don't like to think of myself as having CF, I know I have it and jeez I'm reminded everyday from all the treatments and feeling like rubbish but I see that as just been me and not really fitting into a category. For me, not doing these things would be great but also abit weird!
When terrible things happen to others with CF it kind of doesn't sink in that this could happen to me, somehow I see myself as different. I don't see myself as special or better, I don't think it's denial as I don't deny I have CF and I know it's going to happen to me at some point, although I hope it's no time soon.
A girl called Laura from the CF forums passed away the other day, I didn't even know she was that ill. Is that because she didn't know herself? Was she like me and though it would work out? I'm always quite positive and think I'd push through if my health went downhill. Although I am an ill person I don't actually see myself as ill, I see myself as me with a few (well alot) of extra needs and problems :o)
I don't feel scared or worried, I feel like everything will be OK for me. How can I feel like this when people I know pass away and are poorly? I think I would be scared if one of my very close CF friends passed away as I think they see things like I do, think they are invincible. But thinking that doesn't mean that you are, and that might hit me if one of them left me.
Sometimes my attitude scares me, people keep saying maybe I shouldn't get pregnant as it could seriously make me ill or even kill me, even the doctor has warned me. However these comments seem to go unnoticed in my mind and I think to myself, I'll be OK, it will be worth it. Don't worry I'm not trying to get pregnant at this moment in time, don't want my mother ringing me up! Come on people I shall do it properly and be married first!! haha.
So to conclude, I think I am invincible, I will be OK. This is how I go about my daily business without crumpling into a ball and crying. When I do die I shall remind myself of this blog entry and it will make me laugh!!!
I have started attempting to do my physio three times a day, this is easier said than done! I am coughing up so much sputum and its really sticky and thick, I feel so full of the stuff its the only option I can think of. But like I say easier said than done, it's hard to fit it in if you have things planned and it's hard to force yourself to do it because as you can imagine it is not the most enjoyable of activities I can do on a daily basis!!
I went swimming on Monday night, first time in three weeks. Yes yes I know I am naughty! Pete has now joined the gym too and he was watching me as the treadmills over look the swimming pool. Therefore I had to look cool and like I knew what I was doing, this must have brought out a competitive streak in me and I was racing other swimmers. Yes you read that correctly. Needless to say my legs felt like jelly by the end, I still managed 30 lengths though so I was pretty impressed. I did manage to leave my swimming cap there so I'll have to buy a new one as I assume someone will have nicked it, goodbye rainbow coloured swimming cap! I'll miss you!
As well as discovering I can swim faster than about 2 other people (haha) I have discovered I can still run, but only for about 5 seconds before collapsing. The dogs on their walk decided to run to the car in the carpark across the field so I panicked as it is close to the road and legged it after them. I suspected that they may have seen another dog which is code red situation with a road close by! They are evil dogs that want to kill me, however when I got there they were both sat by the car waiting to get in. Evil for making me run.... but good and clever doggies for sitting by the car :o)
Saturday, 6 June 2009
Nice Dream!!!
I would like to announce that I have had my first nice dream for months! wahoo!!! Although I am abit concerned by it.... I dreamt Thomas Cromwell from the series The Tudors was in love with me. So slightly weird but nice, I'm not going to be picky! It's a start! And now I am strangely in love with James Frain!! Shame he got beheaded at the end of series 3, woops sorry spoiler! Its history though so you knew it was coming!
Pete and I went to see Terminator Salvation last night, it was blumming fantastic!!! Best film I have seen in ages (apart from Twilight obviously...!!!)
Other news - I still have my stupid coldsores. They are all yellow and bleeding, my Nana thought they might be infected so she gave me some sudacream (I have no idea how to spell it) and it seems to helping to dry them out. I have started the ciprofloxicin as I still don't feel 100%, I've been sleeping an awful lot and since the coldsores are not budging I thought this was an indication my body is suffering.
My mum is on holiday at the moment so Murphy is living with us, oh the joys of having two chihuahuas treating you as a climbing frame! They both finished their dog training on Wednesday, Pete and I took them instead of my mum and I. They both managed to graduate (haha) and we have certificates and photographs! I think I'm going to take Alfie to the next level of training since he is so clever! Need to save up abit of cash first!
Tuesday, 2 June 2009
Suzy's Stars
Suzys Stars - a group of people from around the world, united by their love for Suzy, who sadly recently lost her battle to Cystic Fibrosis, aged just 35 years.Suzy loved to craft, & they do too! So they thought they would share this with the world, & raise some money for the CF Trust in the process!Please have a look (just click on the star), there are some really cute things, I have ordered a personalised chihuahua fridge magnet! Such a great and thoughtful thing for them all to do.
Monday, 1 June 2009
Its arrived....drums please!!
I've had a good weekend, probably like everyone due to the fabulous weather!
Saturday night Pete and I stayed in, we watched Seven pounds with Will Smith in (who I swear gets more hunky by the day). It made us both cry although Pete said he had hayfever and only cried because I did! I think they did quite well with the whole transplant issue, for a start I think it was good the way they portrayed the woman as needing a transplant but not looking like she is about the keel over any minute which is how people always expect people needing transplants to appear. I wasn't sure about the bit where they told her she was going on the list, they were kind of like 'here's a beeper, good luck'!!!, I would hope they give you abit more information than that! I won't say anymore anyway as don't want to ruin it for those of you that haven't seen it! I'll just mention that even though I have labelled this post with lung transplant the film is not actually about lung transplant, it just fits in with my categories thats all!
On Sunday we went over to a bbq Pete's parents were hosting, it was a nice day as you know! So we drove over with the roof down on the car. I put my cardigan over my hair like a scarf as it blows everywhere when the car goes fast! I looked an idiot but do I really care?!
Today I have done some weeding in the garden, those pesky buggers! I've sat indoors the rest of the time, I don't want to get sunburnt!
I am quite liking doing these videos on moviemaker, now I'm getting abit more skilled (if you can call it that). Here's a video I thought might tickle some of your fancies since I know you all like Alfie more than me!
Here it is..... drums please!!!!
Saturday night Pete and I stayed in, we watched Seven pounds with Will Smith in (who I swear gets more hunky by the day). It made us both cry although Pete said he had hayfever and only cried because I did! I think they did quite well with the whole transplant issue, for a start I think it was good the way they portrayed the woman as needing a transplant but not looking like she is about the keel over any minute which is how people always expect people needing transplants to appear. I wasn't sure about the bit where they told her she was going on the list, they were kind of like 'here's a beeper, good luck'!!!, I would hope they give you abit more information than that! I won't say anymore anyway as don't want to ruin it for those of you that haven't seen it! I'll just mention that even though I have labelled this post with lung transplant the film is not actually about lung transplant, it just fits in with my categories thats all!
On Sunday we went over to a bbq Pete's parents were hosting, it was a nice day as you know! So we drove over with the roof down on the car. I put my cardigan over my hair like a scarf as it blows everywhere when the car goes fast! I looked an idiot but do I really care?!
Today I have done some weeding in the garden, those pesky buggers! I've sat indoors the rest of the time, I don't want to get sunburnt!
I am quite liking doing these videos on moviemaker, now I'm getting abit more skilled (if you can call it that). Here's a video I thought might tickle some of your fancies since I know you all like Alfie more than me!
Here it is..... drums please!!!!
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