So the last few days I seem to have been quite busy and now I am feeling shattered. These are the type of things I have been up to:
Growing a major concern for a increasing bald patch in my hair just above my left temple!
Battling with a coldsore right in the corner of my lip, it hurts so much!
Also battling with bad skin on my face, hello spots and greasy skin! Not good!
Also still battling with a cold and giving it to Pete in the process
Getting my hair done (this is when I spotted the bald patch)
Going shopping
Ordering some curtains for our new home
Going to the bank to transfer our deposit for the bungalow
Visiting the inlaws
Helping at my mums barber shop
Going to Yoga and bruising my hip
Going swimming and doing 24 lengths again which I'm rather proud of
Developed a fondness for porridge with golden syrup in
Doing voluntary work and getting a certificate for 3 years service (its actually 4 years but they had to give me 3 for some reason that I can't remember!)
Other stuff I am too tired to try remember
We won't be completing on our bungalow this week unfortunately. There was a problem with the house the vendors are moving to, so hopefully it will be next week. Can't wait!
Anyway thats it folks...! I know this is the most boring blog ever..... but I want to go to sleep!
Please fill in my new poll, I am determined to prove to Pete I am not weird!
Wednesday, 31 March 2010
Thursday, 25 March 2010
Vitamin K
I'm sure everyone has been having problems getting Vitamin K, well this is why (if your hospital hasn't already told you)...
Konakion (Phytomenadione) which is the vitamin K preparation that people with CF need to have (something to do with we can't absorb other ones) has been discontinued, which was really nice of them to do.
An alternative preparation available that we can have is available from Denmark called Menadion. They are licensed in Denmark but not the UK, however pharmacy's can import them through a company. It takes upto 3 weeks for them to arrive (according to the letter I have), which in it's self is going to be a pain. I have a nice letter to give to my pharmacy and I attached one to my repeat prescription request when I handed it in on Tuesday.
If anyone needs the number of this company to import the Menadion let me know and I'll give it to you! If this small change in my prescription runs smoothly it will not be short of a miracle! I'm sure the prescription clerk already thinks I am dodgy so this will probably increase her suspicion.
In other news, we have finally been referred to the IVF clinic regarding surrogacy, I have no idea how long before we hear from them, but at least we are getting somewhere.
Other good news is, that yesterday in the Budget it was announced that all first time buyers, buying a house under £250,000 will be exempt from stamp duty from midnight last night. Guess whose purchase should be getting completed next week? That would be us, wahoo! So we don't have to pay stamp duty, good news or what?!
Konakion (Phytomenadione) which is the vitamin K preparation that people with CF need to have (something to do with we can't absorb other ones) has been discontinued, which was really nice of them to do.
An alternative preparation available that we can have is available from Denmark called Menadion. They are licensed in Denmark but not the UK, however pharmacy's can import them through a company. It takes upto 3 weeks for them to arrive (according to the letter I have), which in it's self is going to be a pain. I have a nice letter to give to my pharmacy and I attached one to my repeat prescription request when I handed it in on Tuesday.
If anyone needs the number of this company to import the Menadion let me know and I'll give it to you! If this small change in my prescription runs smoothly it will not be short of a miracle! I'm sure the prescription clerk already thinks I am dodgy so this will probably increase her suspicion.
In other news, we have finally been referred to the IVF clinic regarding surrogacy, I have no idea how long before we hear from them, but at least we are getting somewhere.
Other good news is, that yesterday in the Budget it was announced that all first time buyers, buying a house under £250,000 will be exempt from stamp duty from midnight last night. Guess whose purchase should be getting completed next week? That would be us, wahoo! So we don't have to pay stamp duty, good news or what?!
Monday, 22 March 2010
Feeling Sticky!
Last week I think I might have had a virus or cold or something, not really sure. I find it difficult to tell what is CF related and what is not. My nose was runny but not completely blocked so I don't know if that was sign of a cold or just my sinuses as I have been getting headaches almost everyday, but again this could be because of a cold. It's probably abit of both as one is bound to affect the other. This has been dripping down the back of my throat and it's made me more productive than normal and my sputum has been very sticky. Infact on Sunday when I woke up, I went to spit some in the sink and it was just hanging out of my mouth as it was so sticky it was still sticking to my throat. It started to make me gag and I thought I was going to be sick! I had to pull it out with my fingers, lovely! This could have been made worse because I went out the night before so was I probably dehydrated!
Anyway, all last week I have felt abit achy and tired, very lethargic and not felt bothered to do much. Saying all this though I haven't felt terrible and don't think it's anything major, like I said, not sure what it is really!
Going out on Saturday probably wasn't the best course of action to help with whatever I had but nevermind, I wasn't even planning to go out, we went for a meal then ended up going out after. Spontaneous nights are always the best, had a really good time and got in at 2.30am. I even did my tobi neb when I got in, I'm really am surprised it doesn't make me sick when I'm drunk as it does not taste good but guess I must be used to the damn thing!
I was able to dance alot more than last time which was really good and I drank rather alot. A beggars dog humped my leg which was interesting.... I then kicked up a fuss as when we got into the club there was no handwash or soap in the toilets for me to wash my hands after stroking the dog. No wonder germs get passed around when there are no handwashing facilities! God I am getting old aren't I?!
I hardly seemed to cough which was weird, perhaps the sputum is so sticky I'm not coughing at the moment, I know there is loads there but I'm not coughing as much as usual. Weird! When I do cough it's like a big beastly cough, I sound like a bear and my face feels all red and like my veins are popping out!
On Sunday I didn't get up until about 11.30am and didn't get dressed until about half 3. So my morning physio was quite a late one! I then didn't do my evening physio until about half 10 in the the evening as I went out for another meal (too many birthdays this month). I didn't want to do my physio before I went as I'd only done my morning physio a few hours before!
My friend and I also took Alfie for a walk in the afternoon, even managed to have the car roof down on the way there! Bring on summer!
My friend Tori had another transplant call this weekend but sadly the lungs were not suitable, this is her 7th false call. From discussing this with my friends I found out two people I know would want to donate their organs when they die, but haven't signed up. These aren't bad or selfish people, infact one said they thought organ donation should be opt out rather than in. It just proves that people do want to donate but just don't get around to doing it or don't know how to. It's so silly, I'm going to send them the link so hopefully they will sign up now.
Here are some pictures from Saturday night and a video
Anyway, all last week I have felt abit achy and tired, very lethargic and not felt bothered to do much. Saying all this though I haven't felt terrible and don't think it's anything major, like I said, not sure what it is really!
Going out on Saturday probably wasn't the best course of action to help with whatever I had but nevermind, I wasn't even planning to go out, we went for a meal then ended up going out after. Spontaneous nights are always the best, had a really good time and got in at 2.30am. I even did my tobi neb when I got in, I'm really am surprised it doesn't make me sick when I'm drunk as it does not taste good but guess I must be used to the damn thing!
I was able to dance alot more than last time which was really good and I drank rather alot. A beggars dog humped my leg which was interesting.... I then kicked up a fuss as when we got into the club there was no handwash or soap in the toilets for me to wash my hands after stroking the dog. No wonder germs get passed around when there are no handwashing facilities! God I am getting old aren't I?!
I hardly seemed to cough which was weird, perhaps the sputum is so sticky I'm not coughing at the moment, I know there is loads there but I'm not coughing as much as usual. Weird! When I do cough it's like a big beastly cough, I sound like a bear and my face feels all red and like my veins are popping out!
On Sunday I didn't get up until about 11.30am and didn't get dressed until about half 3. So my morning physio was quite a late one! I then didn't do my evening physio until about half 10 in the the evening as I went out for another meal (too many birthdays this month). I didn't want to do my physio before I went as I'd only done my morning physio a few hours before!
My friend and I also took Alfie for a walk in the afternoon, even managed to have the car roof down on the way there! Bring on summer!
My friend Tori had another transplant call this weekend but sadly the lungs were not suitable, this is her 7th false call. From discussing this with my friends I found out two people I know would want to donate their organs when they die, but haven't signed up. These aren't bad or selfish people, infact one said they thought organ donation should be opt out rather than in. It just proves that people do want to donate but just don't get around to doing it or don't know how to. It's so silly, I'm going to send them the link so hopefully they will sign up now.
Here are some pictures from Saturday night and a video
Me and the birthday boy!
I'm so cool.....!
Come on little brother, give your big sis a hug!
So childish, messing about with Helium
Thursday, 18 March 2010
See the Difference!
There has been quite a few things on TV about Organ Donation recently, so I thought I would share some of them to try help raise awareness of organ donation.
Rachael (who does not have CF but has a different lung condition) received a double lung transplant on the 10th March. All her family and friends are ecstatic and SO grateful as Rachael was seriously poorly and needed new lungs asap, these videos are before she received her transplant. She is an active campaigner to raise awareness of organ donation and has agreed for her journey to be filmed. I have also included a video of Victoria who is still waiting for a double lung transplant and appeared on GMTV this morning, also a video of Emily who received her double lung transplant in 2007; you can see how much of a difference becoming an organ donor can make.
PLEASE sign up and help save peoples lives like these three lovely ladies, click here to sign up
Wednesday, 17 March 2010
We'll miss the curls
I have some very sad news. For those of you who were enjoying Pete's curly hair, he made me cut it off on Saturday. He has been growing it since our wedding but now has decided it takes long to dry.... A very sad day indeed!
Before
During
After
Still looking as gorgeous as ever, sigh, he's so beautiful!
I've done a little poll for fun to see which haircut you think looks best!
Monday, 15 March 2010
Video for Kiz!
We had Murphy stay over three nights last week, I did abit of recording and made this video of their fun days together. This one's for Kiz since he put a special request in!
Pete and I went to the cinema on Saturday to see Shutter Island. It is brilliant, I would highly recommend it. The trailer gives the impression that it is just a scary film which is not true atall. The fact it has Leonardo DiCaprio in it and is done by Martin Scorsese should give you a clue there is abit more to it than that. As we were leaving there were two couples saying to each another that they didn't understand it, oh dear! Unless you are really dumb, go see it!!!
Yesterday it was Mothers day. I had my mum, brother, Nana and Uncle Graham (my nanas husband) over for a Sunday roast. It went okish apart from my cheese sauce was too thick and the carrots were too hard! I cheated and sent Pete to but two ready cooked chickens from Asda, just couldn't be bothered to cook a chicken this time.
When I went to order the flowers for my mum (which turned out to be the biggest bunch of flowers ever), there were these teenagers sat in a car next to where I'd parked. The car was full of smoke and it stunk of weed. When they saw Alfie they all started giggling and acting rather crazy so I decided not to leave him in the car!
Monday, 8 March 2010
How to represent CF?
Had outpatients today, my lung function is the same at 43% and my weight is 54.4kg. So all really stable which is a good thing. It annoys me when the doctors say my lung function is really good though, as I know its higher than it has been but it's not my best. So no I wouldn't say it was really good, I'd say it was OK, don't be celebrating quite yet...! Also, why can I not hit the 55kg mark for my weight??!! Weird!
Had my port flushed and some bloods taken from it to check my liver. I stopped taking voriconazole last week as I have been on it 3 months now, so now I am having a month off before I go back on it. My results from Bristol (to see which drugs would be most effective against the fungus on my lungs) have still not returned, it's been 6 weeks now so they are going to chase that up.
Some of the nurses saw me on TV! I hadn't told any of the staff but they still found me out! They said it was good anyway and asked how it had come about. I don't like to give too much away as I wouldn't like them to find this blog, I don't know why. Just wouldn't feel comfortable with it.
Most people said they liked my TV spot. I know it was abit short but I think they managed to get quite alot in, in two minutes. Some people with CF criticised it saying I didn't look ill enough and what was the point of it, that people would just think CF involved a few pills and physio and that was it, they were quite nasty and did apologise in the end. Then on the other side parents of children with CF were saying it was good that is showed me doing everyday things and was positive, one said they would have preferred to not have the average life expectancy bit.
So either way, however it was put across someone would not have being happy.
Firstly, I think it would be impossible to put across on TV how difficult it is to live with CF unless they followed you for months and had a TV programme just dedicated to CF. Even then I don't think it would be 100% successful. Some things just can not be put across, it's something you have to experience.
Secondly, I do not think the point of the programme was to make people feel sorry for me and donate money to the CF trust. If a person with CF had been on the programme that did need oxygen, was in a wheelchair etc, all that would have done was reinforce people's ideas of what a person with CF looks like. The majority of people with CF look perfectly healthy and normal even when very ill, I think that's what it showed.
What I think the two minutes achieved was to show abit about CF, what it involves, whats embarrassing about it (it was called embarrassing bodies after all) and like the doctor said (I didn't get there in time to record this bit), not all diseases can be cured and people have to learn to live with them, which is what I was doing in the footage.
People with CF need to remember, sputum, tablets, coughing and physio to them is perfectly normal. To healthy people watching, these things are not normal and therefore it has an impact on your average person.
Had my port flushed and some bloods taken from it to check my liver. I stopped taking voriconazole last week as I have been on it 3 months now, so now I am having a month off before I go back on it. My results from Bristol (to see which drugs would be most effective against the fungus on my lungs) have still not returned, it's been 6 weeks now so they are going to chase that up.
Some of the nurses saw me on TV! I hadn't told any of the staff but they still found me out! They said it was good anyway and asked how it had come about. I don't like to give too much away as I wouldn't like them to find this blog, I don't know why. Just wouldn't feel comfortable with it.
Most people said they liked my TV spot. I know it was abit short but I think they managed to get quite alot in, in two minutes. Some people with CF criticised it saying I didn't look ill enough and what was the point of it, that people would just think CF involved a few pills and physio and that was it, they were quite nasty and did apologise in the end. Then on the other side parents of children with CF were saying it was good that is showed me doing everyday things and was positive, one said they would have preferred to not have the average life expectancy bit.
So either way, however it was put across someone would not have being happy.
Firstly, I think it would be impossible to put across on TV how difficult it is to live with CF unless they followed you for months and had a TV programme just dedicated to CF. Even then I don't think it would be 100% successful. Some things just can not be put across, it's something you have to experience.
Secondly, I do not think the point of the programme was to make people feel sorry for me and donate money to the CF trust. If a person with CF had been on the programme that did need oxygen, was in a wheelchair etc, all that would have done was reinforce people's ideas of what a person with CF looks like. The majority of people with CF look perfectly healthy and normal even when very ill, I think that's what it showed.
What I think the two minutes achieved was to show abit about CF, what it involves, whats embarrassing about it (it was called embarrassing bodies after all) and like the doctor said (I didn't get there in time to record this bit), not all diseases can be cured and people have to learn to live with them, which is what I was doing in the footage.
People with CF need to remember, sputum, tablets, coughing and physio to them is perfectly normal. To healthy people watching, these things are not normal and therefore it has an impact on your average person.
Saturday, 6 March 2010
Me on the TV!!
Here it is! Will comment tomorrow as don't have time now. I will say though, I do not usually have such a red and shiny face! There were loads of bright lights shining on me and it made me all warm! Also just ignore us laughing in the background!
Friday, 5 March 2010
Exercise Queen
Yesterday I took Alfie and Murphy for a nice walk, when the sun was shining through the windows for the first time in god knows how long it was a sign that I must venture outside!
Surprisingly it wasn't that busy so they could go off their leads for awhile, they were running around like spring chickens bless them and were every well behaved. Alfie tried to chase some ducks but they got away, no duck for dinner then!
Near the end of our walk we bumped into another lady with two chihuahuas, one looked exactly like Alfie had done when he was about 5 months old. Kind of skinny and scrawny looking as the fur hasn't grown long yet
Hello Big Ears!
This puppy just started yapping and would not shut up (and the resemblance to Alfie grows even more), Murphy and particularly Alfie had no idea what to make of it. At this point Alfie would usually be barking and growing back, but he wasn't! He must have been confused that this dog was smaller than him and making more noise! Infact when I gave Valentino (the puppies name) some treats, Alfie attempted to sniff him! Seriously this is a miracle! I hope I bump into them again as we might be able to use each other to socialise our dogs.
I also went swimming last night and did 24 lengths in 30 minutes. This is the most lengths I have done in awhile, I admit I did feel abit sick at one point because I was out of breathe but I kept going and it soon went. I was swimming next to this woman and kept overtaking her to make me feel good about myself, sad I know but it kept me entertained as swimming is so boring and such hard work! Aiming for 26 lengths next week then add another 2 the week after etc.
With any luck my lung function will have stayed stable when I go to outpatients next week!
Thursday, 4 March 2010
Surrogacy Blog
I have decided I am going to do a separate blog regarding all the surrogacy stuff and it will be a private blog which means you need to be invited to read it.
There a few reasons for this really. Firstly, this is a private matter and I do want to share it with people, but not the whole world! There are upto 70 people reading my blog now, I don't know who they all are, I'm sure you are all lovely but there are weirdos in this world... I know this from going on the CF forum and since I have a link on every post I make on the CF Forum, theres a high chance they may look on here from time to time!
I created my CF blog to help people understand CF and those with CF to know they are not the only one who has these feelings and thoughts and perhaps help them understand CF themselves abit more. I think the surrogacy thing is a whole other issue and its not just about me like CF is. Surrogacy is about Pete as well, about my family and about hopefully in the future another lady who is going to carry our baby. They might not want their intimate details on the web for all to see.
There is also legal issues. I have already gotten in trouble by putting my blog on the surrogacy forum, apparently it can be seen as advertising for a surrogate which is illegal, this was not intended atall.
All these things have made me come to the conclusion having a separate blog which goes into all the details is better. I admit the two will overlap, there's no avoiding it!
I will continue to update on this blog about the process, but not in great detail. Some people will probably prefer this, so if you don't want to know all the ins and outs then just read this blog and I assure you, you will still know what is happening.
If however you want to read about sperm, ovulation and so on, then drop me an email with your email address and who you and if I deem you worthy of reading my other blog I shall invite you! Don't worry there isn't a test ;o)
Once invited click here to view the blog
There a few reasons for this really. Firstly, this is a private matter and I do want to share it with people, but not the whole world! There are upto 70 people reading my blog now, I don't know who they all are, I'm sure you are all lovely but there are weirdos in this world... I know this from going on the CF forum and since I have a link on every post I make on the CF Forum, theres a high chance they may look on here from time to time!
I created my CF blog to help people understand CF and those with CF to know they are not the only one who has these feelings and thoughts and perhaps help them understand CF themselves abit more. I think the surrogacy thing is a whole other issue and its not just about me like CF is. Surrogacy is about Pete as well, about my family and about hopefully in the future another lady who is going to carry our baby. They might not want their intimate details on the web for all to see.
There is also legal issues. I have already gotten in trouble by putting my blog on the surrogacy forum, apparently it can be seen as advertising for a surrogate which is illegal, this was not intended atall.
All these things have made me come to the conclusion having a separate blog which goes into all the details is better. I admit the two will overlap, there's no avoiding it!
I will continue to update on this blog about the process, but not in great detail. Some people will probably prefer this, so if you don't want to know all the ins and outs then just read this blog and I assure you, you will still know what is happening.
If however you want to read about sperm, ovulation and so on, then drop me an email with your email address and who you and if I deem you worthy of reading my other blog I shall invite you! Don't worry there isn't a test ;o)
Once invited click here to view the blog
Wednesday, 3 March 2010
Bump
I had a little incident with my car yesterday, in that someone reversed into it! Thankfully my car is fine, I'm not sure about hers, I didn't care since it was her fault!
I'd just had my blood taken at the GP's and had reversed out of my car parking space, was putting my car into gear to move away and my rear beepers started going off which I couldn't understand as my car was not moving so how could I be getting closer to something? Then I realised a car was reversing into mine, but it was too late and there was a little bump. I got out and the other woman got out and started shouting at this other woman in her car! This other woman had been parked in the middle of the carpark, obviously waiting for someone to drop something off so not bothering to park properly. When I got in my car she was in the way of mine and moved when she saw I wanted to leave. I didn't really see a problem, but to be fair I wouldn't have done what she was doing as its a busy carpark and she was in the way wherever she stayed.
Anyway the woman who had bumped into me was shouting at her saying it was her fault... erm no I don't think it was. The shouting woman had a cigarette in her mouth and I get the feeling the reason she bumped into me is that she was too busy lighting up rather than looking in her mirror, silly woman! Excellent example of blaming someone else when you know it's your fault!
Anyway like I say, my car was fine so I went on my way. Perhaps I should have given her a telling off, I dunno. She looked pretty scary so I wasn't sticking around!
I'd just had my blood taken at the GP's and had reversed out of my car parking space, was putting my car into gear to move away and my rear beepers started going off which I couldn't understand as my car was not moving so how could I be getting closer to something? Then I realised a car was reversing into mine, but it was too late and there was a little bump. I got out and the other woman got out and started shouting at this other woman in her car! This other woman had been parked in the middle of the carpark, obviously waiting for someone to drop something off so not bothering to park properly. When I got in my car she was in the way of mine and moved when she saw I wanted to leave. I didn't really see a problem, but to be fair I wouldn't have done what she was doing as its a busy carpark and she was in the way wherever she stayed.
Anyway the woman who had bumped into me was shouting at her saying it was her fault... erm no I don't think it was. The shouting woman had a cigarette in her mouth and I get the feeling the reason she bumped into me is that she was too busy lighting up rather than looking in her mirror, silly woman! Excellent example of blaming someone else when you know it's your fault!
Anyway like I say, my car was fine so I went on my way. Perhaps I should have given her a telling off, I dunno. She looked pretty scary so I wasn't sticking around!
Monday, 1 March 2010
Channel 4
Hello
Just to let you know I shall be on TV on Friday, Channel 4 9pm. I am going to be on Embarrassing Bodies, don't be put off by the name, they are doing sections of 'Living with ....' amongst the other stuff they do, so my section is living with CF. I hope it's ok and I don't let the side down, if I am honest I am dreading it!!
Just to let you know I shall be on TV on Friday, Channel 4 9pm. I am going to be on Embarrassing Bodies, don't be put off by the name, they are doing sections of 'Living with ....' amongst the other stuff they do, so my section is living with CF. I hope it's ok and I don't let the side down, if I am honest I am dreading it!!
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