Bones

Yesterday morning I had a bone scan, I have to have one every 2 years (I think). Years ago this scan showed my bones were slightly brittle and I was put on extra calcium tablets and another tablet that elderly people tend to have. The scan after that showed they were working and my bones were better, so I am hoping this scan will show the same. It is routine for people with CF to have these scans so nothing to stress about. It's really easy, you lay on a bed and this machine goes over the top of you, you have to put your legs in a few different positions and it takes about 10-15 minutes. My appointment was at 10am however I got there early as it was at the LGI, not St James and I always find the LGI difficult to find and get parked, so I set off early. Anyway I got there for 9.30am, was receiving the scan by 9.45am and was out by 10am.

I'm still getting used to my new car which is a new Astra, it's alot bigger than my mini and it doesn't have a handbrake. It has this stupid button instead and it's annoying me, you can't turn it off unless you have the foot on the brake and it has this hill start assistance which is majorly annoying me. After you take the foot off the brake it doesn't roll back for 2 seconds, but it won't let you accelerate either! Are people that rubbish at driving that Vauxhall have had to create something that means people don't roll back? What about people who can drive properly and would like to set off quickly?! The annoying thing is, when I test drove the car, this one had a normal handbrake so I had no choice but to believe the guy when he said I would get a button but apart from that it would be the same. When he calls me to see how it's going, I will not hesitate to tell him what I think! I'm sure I will get used to it, but at the moment it is majorly annoying me! Apart from that I seem to be getting on fine with the car, it looks very nice inside although I feel very small in it!

I forgot to mention last week but Pete has got a promotion! Wahoo! From the 1st October he will be a Senior Planner, very proud of him as he has worked so hard and it's finally paid off!

I went food shopping by myself on Wednesday for the first time in ages. I figured now that we live in a bungalow so there are no steps to carry the shopping (apart from the two to get in, the flat had loads of stairs) and we have a car that all the shopping can actually fit in the boot and not have to go on the back seat, I might be able to manage by myself. So I got there and all the disabled spaces were taken, I had to drive around twice before someone left and I could get in. Half of the cars didn't have disabled badges in them and the car next to me had a guy in it asleep with no disabled badge, I mean the cheek! Then I got into Asda and they are in the middle of expanding the store, so nothing was in it's usual place, the middle bit was shut and you had to walk around it and it was packed because I assume it was closed Monday and Tuesday and so everyone had come on Wednesday. In addition to this they didn't have loads of the stuff we usually get and I found it difficult to push the trolley (Pete usually does it!). I was tired when I got home and Pete brought all the shopping in, then I didn't eat my tea because I was too annoyed and tired. Needless to say I decided that I shall not be going shopping on my own again! Thanks Asda for making me hate shopping even more! Grr!

Bye Bye Mini

Well she's gone, it was a sad day on Monday as I drove away in my new car and left the Yellow Peril to go to a new owner. I hope you go to a good home my friend xx

Please Vote!

We have now sent off our forms to join Surrogacy UK and we have to send a few pictures once our profile is available, for potential surrogates to view. So we need your help choosing which photos to pick! You can vote for more than one photo, if there were any photos you saw on the slide show I did for our wedding anniversary that you think would be better, let me know in the comments section! You can vote on the right-hand side of my blog. Voting closes tomorrow night so that can I can email them on Sunday. Thanks for your help!

Picture A


Picture B

Picture C

Picture D

Picture E

Am I CF Or Do I Have It?

As you know, I help out at my mums barber shop and to be honest I’m getting abit fed up of people not knowing what CF is and as a result me avoiding telling them I have CF. I don't want to talk about CF all the time, people can't comprehend how it affects me and it also creates an awkwardness for the them.

Conversations tend to go like this

Customer: are you still studying?
Me: no I finished Uni about 3 years ago
Customer: oh right, you looking for a job to do with your degree then?
Me: no not really
Customer: oh right, how come?
Me: I have cystic fibrosis so had to give up working at the college I worked at after uni
Customer: whats that then?
Me: [wants to scream}

Or

Customer: you must be new here never seen you before?
Me: no I’ve been here ages, my mum owns the shop. I don’t work many hours
Customer: oh how come, got another job or a kid?
Me: no I have cystic fibrosis so it limits how much I am capable of working
Customer: whats that then?

Or

Customer: What days do you get off then?
Me: I’m only here Saturdays
Customer: oh right, got another job or a kid then?
Me: erm neither, I have cystic fibrosis so struggle to work a lot of hours
Customer: whats that?

Or

Customer: you going out tonight then?
Me: no I’m not feeling very well, how about you?
Customer: nah, whats up with you? Hope its not serious?!
Me: well I have cystic fibrosis and I'm not too well at the moment
Customer: [looks all awkward and goes quiet]

Or

Customer: you got a cold or hay fever?
Me: erm neither thanks
Customer: whats with the cough then?
Me: I have cystic fibrosis
Customer: whats that? Is it serious?

OK you get the jist! I don’t want to spend all my time explaining what CF is so end up just trying not to talk to people! Plus it makes them feel awkward and embarrassed! I mean how can you explain CF in terms that people understand without making them feel uncomfortable! You can’t believe how nosey people are! The thing is, I barely know these people, I don't want to have to explain my life to them and I don't want the awkwardness which emerges once I tell them I have a disease, plus I get asked stupid questions like 'isn't there a cure?'. CF is not who I am but somehow it seems to leak into everything I do and talk about! It seems to be becoming part of my identity more and more. It's in my mind all the time, whether it's planning when I need to do my next nebuliser or trying to figure out how to explain a part of it to someone. I suppose I could lie but that's not how I think I should live my life.

I once did a customers hair and I knew his daughter, he said 'oh which Gemma are you? The one with CF?', is that who I am? Is that how people remember and describe me?

I am not ashamed I have CF, however it's a difficult disease to explain in simple terms and it would be nice to get away from it, I know it's impossible but one can hope....!

Rainy Anniversary!

I'm back from the Lakes and I'm tired so this will be a short blog.

We had a great time even though it rained alot of the time! We managed two walks, one was about an hour long around Grizedale Park and the other was 3 hours (!) by Coniston lake, we had a picnic by the lake during the walk, it was very nice. We found the walk in a book where all the walks in there are flat i.e. no uphill bits. It's like the book had especially being made for me! :o) There were still a few uphill bits that I struggled with (Pete picked one of the more difficult ones out of the book...) but nothing a person with healthy lungs couldn't cope with, it would be very difficult to find a completely flat walk in the Lake District, afterall it is very hilly! Needless to say I was tired afterwards and had to have a nap and I'm still tired today so just taking it easy.

Oh and I did it again, I forgot to take spare disks for my I-neb...! So only had 12 cycles when I do 9 a day! Had to cut out my hypertonic saline and only do my tobi once a day, this cut it down to three cycles a day. So had a nice break from my nebuliser regime for a few days!

Man makes fire with help from wife...Stylish as ever!Our Wedding CandleHow cute am I?!

Wedding Anniversary!

I've added an extra icon on the side of my blog to show what I am reading at the moment. I have copied this off another blog and thought it was a good idea as if you are like me, you enjoy reading but never know what to read! My local library is not the type you browse through, you have to tell them what you would like to borrow and they will order it in for you. This means you have to know what you want to read, therefore I like to know what others are reading to give me ideas! The book I am reading at the moment is mine, not from the library and I've already read it once but I absolutely love it so reading it again! I just finished 'If You Could See Me Now' by Cecilia Ahern (author of PS I Love You).

Big news, I have changed my hair colour! My hair is now a strawberry blonde colour, which is not ginger as people keep saying it must be. My aim was for a very light brown with a pinky colour to it, it's stayed blonder than I hoped, but that is because of the bleach still in my hair, it just needs to grow out, you can see the proper colour on my roots where there is no bleach! I tried to take some pictures but they don't really do the colour justice

Since I finished my IVs last week I have been feeling tired very easily, in fact I am feeling quite annoyed about it. I already seem more chesty and am getting breathless easily. I went to yoga on Monday and I got so breathe less I thought I was going to have to sit out for awhile, we were doing all these stretches stood up, called warrior one, crescent moon etc

I always find them harder as it is, but all I could do was think about trying to breathe and then the yoga teacher was moving my arms and hips to get me to do the positions correctly and I just wanted to scream at her 'I can't breathe never mind do the bloody stretches correctly!'. I pushed myself to keep going though as I don't want to be the odd one out, I hate appearing weak! So even though I felt like my face was going to explode because it was red from lack of oxygen or something and I was breaking into a sweat, I kept going and managed to not collapse in a heap. After relaxation I swear I had to shout at myself in my head to actually get up and drive home, then the rest of the night I just laid around as I had no energy.

So no I am not happy with my stupid CF this week, especially since we are going to the Lake District for our wedding anniversary and were planning to go on some walks.

Yes that's right, on Saturday Pete and I will have being husband and wife for a year! I can't believe it, it's gone so fast. I feel so lucky for having bagged myself such a great husband and I can safely say that marriage has not somehow made our relationship deteriorate, as all these TV programmes would make you think. According to them we should be getting divorced by now right...?! I love Pete so much and I can't wait to spend the next year with him, and the year after that and forever!

Here is a little video I have made for us

Smooth 2 weeks

I finished my IV's yesterday and I think it's the first time since I can remember that I've had a smooth course of IV's and have managed to maintain a relatively normal life whilst on them!

My port hasn't itched or being sore, the only problem I had is when my needle was changed half way through, the area hurt for a day or two afterwards and towards the end, the muscle was starting to feel tender. The dressing came off yesterday and needle out and there were no lumps or bumps, weeping or crust, just abit of flaky skin and some redness from ripping off the dressing. Wahoo! So we have sorted that problem which is great!

I haven't felt particularly poorly whilst on the IV's, abit tired and groggy but nothing compared to usual. There a few things that may have contributed to this a) I have tried to stay well hydrated through drinking powerades, they also give you energy b) I have taken anti sickness tablets (ondansetron) before every dose of IVs c) I have 2gx3 a day ceftaz in the first week then upped to 3gx3 a day in the second week. Obviously there could be other factors such as what was making me require IVs in the first place, but I think the listed things have helped.

Pete said something like this the other night...
Pete: 'did they increase your IV to 3g?'
Me: 'yes why?'
Pete 'well why aren't you tired then? usually when you are on your IV's you are sleeping by now but instead you are jabbering on, I like getting the peace and quiet'

Charming...! But a perfect illustration of how much better these IVs have gone!

My weight has increased to 56kg which I am not surprised with, I can't stop eating lately, I'm going to turn into a right fattie!

So at the end of IV's my fev1 is 39% which I am disappointed with but hopefully by my next outpatients appointment it will have gone up abit more. I was hoping the hypertonic saline might have helped it increase as I've heard stories of it helping people get their lung function up by 10%!

Since I finished my IV's yesterday I have felt chesty already, sometimes I wonder if it's in my head! However I went to yoga this morning and was coughing whereas I did some more bulb planting on Wednesday and didn't cough at all. I also have gotten a headache yesterday and today and it feels like its my sinuses. It's almost like I've stopped the IVs and the mucus is building up already!

I'm going to see a scary film with my friend this evening, I watched the Grudge 3 the other night and it wasn't even that scary however when I went to the toilet in the night I saw something white out of the corner of my eye and ran back into bed! I get scared so easy, so maybe this isn't such a good idea.....