Everything is OK in this neck of the woods

Oh my gosh, how is it July and I haven't done a blog post since April...! Apologies!

I must say that insulin and Azli (Cayston) seem to agree with me, I think I am the healthiest I have been in a long time! My lung function at clinic last week was 44% and my weight 56.5kg (yes i'm getting fat!) and I'm on my month off Azli!

I've dropped the insulin at lunchtime on advice of the Doctor as I was having quite a lot of hypos (low blood sugar) even with just one unit of insulin as lunchtime. I monitored my blood sugars last week and was getting some high readings after some lunchtime meals but not others so the CF team are going to decide whether they want me to start having insulin at lunch again or not.

Our second round of IVF surrogacy did not work which was heartbreaking as we really thought it would this time as things went so well leading up to it. The good news is we have six frozen embryos so are due to do a frozen embryo transfer in the upcoming weeks.

I have ordered my new mobility car as believe it or not it's nearly three years since I got my Astra, so also three years since I gave back the love of my life, the Yellow Peril Mini! The good news is I will soon be the proud driver of another Mini! That's right folks I'm getting another one, but a Mini Cooper Countryman this time. She is going to be beautiful! Dark red with a black roof and black tyres, I can't wait to go cruising in her. We are even discussing the possibility of a road trip to France next year in her! I can't decide on her name, either Rollin Roz or Ruby Roz, I guess it's a case of deciding when I see her in the flesh! 

In other good news... I was awarded ESA! The relief is amazing, to know I don't have to worry about been forced to work or go through a medical which I've heard are horrible. I had some problems receiving the new payments which I had to get Mummy to sort out as the people on the phone are horrible, but that's nothing compared to what could have happened. 

Alfie has a new friend called Jasper, he is about 16 weeks old and half Jack Russell and half Chihuahua. he is my brothers puppy and we had to get the dog trainer out to show us how to introduce Jasper to Alfie as Alfie does not like dogs apart from his buddy Murphy. They are getting on OKish now but it's taken a lot of time and energy. Jasper is a mental dog, he never stops moving, he never seems to sleep, he digs, chews and eats everything and he likes to wind Alfie up by runnning around him and sometimes even biting his tail. Alfie being a more mature dog these days (he is now 6!) is not impressed as he just wants to lie back and relax whereas Jasper wants to play. Therefore these differences cause Alfie to tell Jasper off quite often and also me tell Jasper off quite often as he always seems to be running off with something of mine like a shoe or a charger, if you leave anything on the floor he will have it and he is fast! The joys of puppies! Here is a photo of the troublesome trio, from the left: Murphy, Alfie, Jasper - good boys sitting for treats!

Here are a few pictures from the past few weeks

First night out in months as actually felt well enough!

Trip to Bridlington (weather was horrible!)

Trip to the Lakes after failed surrogacy attempt to cheer ourselves up! (weather was beautiful!)

 One problem with Azli... you have to do it three times a day so end up doing it in very random locations!

We were followed by a herd of young cows, it was quite scary! Like the Cravendale advert!

I must admit, things are hard for me at the moment with our second surrogacy attempt failing. I might be doing well CF wise but psychologically I'm struggling, however I'll save that for my surrogacy blog! I do know something though, that after everything we have gone through this year I know I love Pete with all my heart and know we can get through anything together! I am so grateful everyday I have such an amazing person in my life! Hope everyone is well, I will try update again before three months has passed!

My Clever Little Alfie

I feel like I have neglected Alfie for a while on my blog so here are some videos of him doing stay, recall and stop. He is really good at obedience and training whatever his other faults may be. Love him so much!

Donating Blood

Pete gave blood last week, I'm very proud of him!

The needle they use is about the size of a venflon so quite big but the nurse got in easily after cleaning his arm for like 40 seconds, they don't even take that long cleaning my port before it's accessed! It didn't take very long for his blood to fill the bag compared to other people, less than 10 minutes I'd say. Then afterwards he got a nice big dressing and some round thing that they tape over the hole whilst applying pressure, I assume it's to try stop bruising. Jeez when ever I've had needles I'm lucky if I get offered a plaster..! Then he got to have a drink and some biscuits. Apparently he can give blood every 4 months, not sure if he is planning to do that or not. I wish I could give blood but it's not possible since I have CF, as well as being on antibiotics all the time.

If you would like to look in to donating blood, click here

Yesterday was Mothers day and since I am feeling quite well at the moment we had my Mum and Nana round to ours for Sunday lunch, there were 7 of us in total. It was cosy around the table but never mind! I had the left overs in a sandwich today, ummm Sunday dinner sandwich!!

The only complaint I have CF wise at the moment is I keep feeling really tired afternoon/evening time and falling asleep. Last night I fell asleep for about 30 minutes in a uncomfortable position on the sofa, not sure how I managed to nod off! I didn't go the gym at all last week as I have naps instead. I don't really understand it as I am finding it difficult to sleep in on a morning past 8-8.30am, surely if I was tired I would sleep in until later? Who knows?!

Alfie has being having some toilet problems, in that he keeps weeing in the kitchen on a night even though there is a puppy pad down for him (which he doesn't use very often) and we spray the areas where he wees with a repellent. Therefore when I wake up during the night I am getting up once or twice and letting him outside, it seems to be doing the trick however I feel like we have a puppy again not a dog that is nearly 5 years old! It seems to be working though so I shall keep doing it for the sake of our curtains!

I have being taking Alfie to dog classes every week as part of his behavioural training, mainly to try help him behave better with other dogs and for the trainer to see how he is progressing. Last week we had to get our dog to sit on some cardboard, then walk over some poles, sit on some bubble wrap, walk on a plank of wood that was like a sea saw, walk over some hoops and sit on some more cardboard, the aim was to try get them used to obeying commands on different textures. Alfie was really good at it compared to the other dogs and he is a nervous dog, so I was very happy with him.

Goodbye Steroids

Today is my last dose of steroids and I'm quite glad really as a few of the side effects starting now aren't that great. I really enjoy the energy they give me and 'the false sense of being well' , however I am not enjoying the indigestion problems (constipation and now the opposite!), mood swings, waking up at 5am and not being able to get back to sleep, greasy, spotty face, dry mouth/thirst and sweaty hands! Luckily my face doesn't seem to have gone all bloated, but I know it would if I stayed on them for longer as it has in the past.

As I have been reducing the dose I have felt more and more irritable so I am dreading the first few days of been off them completely. It doesn't help when people annoy me, like the woman who stormed out of her house on Monday to have a go at me for Alfie weeing on her plant when all he did was sniff it or the woman who when I asked her to recall her dog away from me and Alfie as it was jumping all over us and getting tangled in Alfie's lead and she was just ignoring it, told me 'he just wants to play' 'this is a park you know'! These type of situations do not help!

I am worried that I will start to feel unwell again though, I'm still coughing sputum up during the night and I keep getting this horrible rumbling in my chest and crackling day and night but then I don't really cough anything up! I tend to cough lots up in my morning physio but not much in my evening physio but then as soon as I'm in bed its crackle, rumble and then I sometimes wake up choking on sputum!

I am trying to go to the gym lots and I went four times last week so very impressed with myself! Will be interesting to see if I can keep this up once I'm off the steroids!

Weight wise I have no idea as one day I weigh 53kg another day I weigh 55kg, but I am eating more and having my supplements so trying my best!

I have a busy few weeks coming up so not really done much the past week. I did take Alfie to a dog class last Thursday, one of the tasks was to get your dog to sit on eight mats one after the other all in a row and Alfie managed it in 28 seconds, yeay!

I've got to have a filling next Monday and I'm scared, I've never had a filling in my life and no idea what they do, so wish me luck!

My Little Munchkin

Sorry for lack of blogging, I know know....!

I finished my IVs two weeks ago and my lung function was 42% so back to normal and I felt alot better. The Doctor and I have agreed I am going to start one month on and one month off Tobi nebs again to see how I cope, its to do with costs and how toxic they are, plus the time they take. I must admit the last two weeks have been wonderful, only having three nebulisers to do rather than five! I am worried though that when I go back in December my chest may have suffered as a result, not good so close to the busy festive period!

The day after I finished my IVs I felt terrible, I was so tired and my whole body ached. The thought that my IVs hadn't worked made me so miserable I just curled in a ball and I slept most of the day because of the tiredness. Then the next day I felt great! As I was driving back from yoga I realised I'd had my flu jab when I finished my IVs and that is what has made me feel so tired and achy! I have never felt like that before with a flu jab, so it must just be this years vaccine for some reason.

Two weeks down the line and my chest isn't the best but I think most of it is down to the weather becoming colder, I took Alfie for a 40 minute walk yesterday and my chest hurt the rest of the evening, it felt like it was burning and I must have loosened lots of mucus as I coughed all evening. This doesn't help my shoulder and upper back situation, they've been sore for about 10 days and it hurts so much when I cough. I don't know if I have pulled something or what but if it hasn't gone by my next outpatient appointment I'm going to mention it.

The hole in our ceiling is finally fixed! However we decided to decorate the bedroom whilst it was empty, so we are still in the spare room until next week. My mum has done the wallpapering today and I've finished off the paint, half the glossing is done so we are nearly there, this week has been tiring and I haven't even done that much!

I don't know if I mentioned on here but we are doing some behavioural training with Alfie at the moment to try encourage him to be more sociable. We are doing BAT (behavioural adjustment training) with teaches him to think before he acts, easier said than done! We also have a sounds CD to desensitize him to sounds that scare him such as fireworks, traffic, children etc. Not really sure how well it is going but I'm trying my best! Here are some pictures of my little munchkin as requested, aw I love him so much!

On our walk yesterday

All snuggled up in my blanket, he likes the cold weather about as much as I do!

Catching some rays whilst he can!

All Clear

Well I relieved to say my constipation problem has finally seemed to sort itself out. The day before Pete did the Great North Run I felt terribly blocked and bloated so after emailing a CF friend for advice I took 6 movicol together and 2 senna. Then the next morning I took another senna. I was slightly worried I could have a problem since we would be outside all day with only port-a-loos! But nothing seemed to happen. Then that night I took 2 senna and 4 movicols. This seemed to get things going and then I have gradually reduced the number of movicols, I'm now down to 1 movicol and 2 senna each night. I'm going to try have the senna alternate nights but we'll see how it goes. The Doctor says this is fine and to do whatever I want really as long as things are moving along.
So my suggestion is to take up to 8 movicols in one go if you are blocked up ( take at night), slowly increasing the dose doesn't seem to help. Just give it a blast and then slowly reduce the sachets.

Last week I did a presentation at Scope, I did it about 2 years ago and was asked to do it again for new mentors. I just used the same slide show but updated a few things, mainly the bits about people I know with CF as some have sadly passed away and others have had transplants. I managed to print the handouts in the office from the usb stick but then the usb stick would not work in the projector laptop, so we tried it in 2 other laptops including the one in the office I had just used and it wouldn't work in any! Nightmare! So I had to do the presentation from the handout which was disappointing since some of the pictures were not very clear on it. It always amazes me how little people know about CF, one guy said he didn't realise it was so serious, nearly everyone had no idea how much treatment is involved. So I'm glad that I can help try educate people.

Pete and I took Alfie for some behavioural training on Sunday which was interesting. Alfie can be funny with strangers, children and other dogs and we were thinking of having him neutered to try help with the problem. The vet told us we would need to incorporate it with some behavioural training so I contacted the place were we took him for his dog training classes and they referred to the behavioural specialist. She says not to get him neutered until she has assessed him as it could make him worse. We had an hour with her on Sunday and then we get 3 follow up sessions, which will involve her bringing in a dog to teach Alfie how to behave with them, also we will use a doll that makes baby noises to get him used to children and teach him how to behave around strangers. The good news is that he is not classed as aggressive, he doesn't just go around attacking people, I think she used the term 'highly reactive' haha. People who have met Alfie will laugh reading this because he can be a little bugger and has a reputation, but I've always argued he isn't aggressive, once he knows people he is fine and so loving and gentle with them and eager to please. Anyway we have some tasks we need to do before our next session, so fingers crossed it helps Alfie become a less stressed out doggie!

I had an Outpatients appointment yesterday and have started some oral ciprofloxacin as I think I have picked up a virus. I'm waking with a headache every day, sweating loads in the night, feeling tired, getting breathless more easy and my sputum is thicker. You can tell winter is coming, I hate winter because I catch every damn cold going and need IVs! Fingers crossed that isn't the case this time.

My lung function is slightly down to 41% from 43% which apparently is stable (it annoys me when they say that, a small decrease in % means more for me as it never moves too dramatically), I weigh 57kg (yikes, fattie!) and all my annual blood results came back OK. From what I recall they test all vitamin levels, iron levels, if I'm anemic, my crp which is your infection level (mine is 17, it should be below 10 but mine never gets below 10 apparently), my aspergillus levels (fungus) both of which are higher than they like but mine never get to those levels (why am I not surprised), my thyroid hormone level, calcium level (slightly low) and blood sugars. That's all I can remember! I have been given permission to come off Voriconazole for good now until my symptoms start to reappear so that's good news as the side effects were getting worse with each course of treatment!

By the way, we still have a hole in our bedroom ceiling and so still sleeping in the spare room. The insurance company are taking forever!!

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!

Alfie the Bully

Yesterday we tried to introduce Ruben and Alfie to one another. It was going well at first, they were sniffing each other and I thought we might actually be on to something. Then Alfie had to ruin it by trying to basically attack a poor puppy, Ruben then started barking back (a very cute bark) which set Alfie off even more and in about 30 seconds Ruben was Alfie's worst enemy. Alfie was making all these weird whining noises like he was really scared but he wanted to get close to Ruben at the same time, as long as Ruben doesn't look at him it seems everything is ok.... ok so how is that going to work exactly? Eventually my dad sat Ruben on his lap and I gave Alfie treats everytime he got abit closer to Ruben without barking, he got really close and was sniffing Ruben but as soon as Ruben looked at him he was growling again. Ruben was abit scared but overall he was pretty chilled out, I think all he wanted to do was play with Alfie! So that is round one over and done with. I think I am going to try walk them together, because then they will be concentrating on other things and not each other and will learn are not a threat to one another. Here's hoping anyway! Who knew that dogs could be such hard work?!

We took Pete's parents and my mum to look at the bungalow we like and have come to the conclusion it needs quite a few things doing to it and is definitely not worth the asking price. So I think we might put a much lower offer in and see what the owner says, it needs new windows etc which obviously would cost quite abit of money and once we start paying a mortgage we are not going to have much money left over for anything else. There were these two massive fluffy cats in the bedroom, I've never seen anything like them before! About three times the size of Alfie! If we move in there and they keep coming back (cats sometimes do that) Alfie is going to have to be careful!

I'm starting to feel better in myself but I can't say my chest is and neither my appetite. I've been told to try have two skandishakes a day but it's not happening, I'm having one for breakfast (since I don't seem to like cereal anymore) and the taste seems to linger in my mouth all day so the thought of having another makes me feel sick! Is it wrong that I actually like having a bit less weight on me? It's like I know it's wrong, however I have been brainwashed by society that it looks better. Apparently my bmi is just under 20 now and they like cf patients to have a bmi of 21-22, so it's not like I'm underweight or anything, it's just that they like cf patients to have abit of meat on them.

This voriconazole is definitely messing with my head or something, last night I woke up after having another weird dream which I can't remember and I was soaked in sweat. The bed was wet, my pillow was wet and all my hair was stuck to my face. We are using an electric blanket now its colder on a night so I turned that off but it's never made me sweat like that before! The night before last I had some freaky dream that I had a baby and was letting Pete's mum adopt it and then I broke into the hospital and stole the baby back! Weird!

It must be nearly winter, colds are here!

I went to Yoga as planned on Friday, I really enjoyed it although I discovered I am not very flexible and also that everyone in my class was at least 10 years older than me or more. Whilst you do the stretches etc you have to take deep breathes and we also did some meditation where you concentrate on your breathing so I hope it really helps. I have tried yoga once before, many years ago, I think I was about 16. I absolutely hated it, all I remember is there was alot of standing straight like a tree, there was none of that in this class, it was alot more productive. I told the lady about my CF at the start, basically I told her I had a port in my arm that might mean I couldn't do some of the stretches with my left arm if it involved bending it around my back etc and also if I started coughing just to ignore me (which I didn't do anyway).
I did in the changing room though and some woman started going on about my cough and that make sure I didn't give swine flu to anyone, she was really loud and everyone could hear so I put her straight. So then she was all apologetic (making me feel guilty) saying I looked at fit as a fiddle and she told me I took loads of tablets (yes I do know that) then her mate was commenting on me coming to the gym. I was like 'hello I just want to get changed and go'...! Everyone was gawping at me in the room, I was mortified!

At the weekend Pete and I went out into town for his mates birthday. It wasn't the best night for various reasons I can't go into. Then on Sunday we went to see the inlaws for a nice Sunday roast, even Alfie came with us and I was trying to use the clicker training (which he did take to) to get him to behave near our nephew. Alfie still barks at him and has to stay on his lead and now the baby is running around and loves Alfie, its difficult to keep them apart. So basically everytime Alfie didn't bark at the baby and was well behaved I clicked the clicker to tell him this was a good behaviour and gave him a treat. Eventually the clicker will become the reward itself as he will associate it with getting treats i.e. been happy and pressing a clicker is alot easier than rooting through the treats box each time he is good. Obviously you still have to give him treats sometimes, he's not stupid! If you ever did psychology at A-level/degree you will probably remember Pavlovs dogs, it's the same concept with the classical conditioning.

On Monday Pete had the day off work, he has had a cold since we came back from Thailand and he was quite bad on Monday. I tried to be as sympathetic as possible, I even slept on the sofa on Sunday night, he was snoring and breathing all funny and I couldn't exactly kick him out of bed could I? I ran him a bath, went to the chemist for him but by the afternoon my nice streak had worn off before guess who else started to feel rubbish? Yes that would be moi..! So my gym routine was already ruined although I did take Alfie for a walk so still got some exercise. I am gargling TCP twice a day and using vicks first defense but I have developed a productive cough and my throat is starting to hurt. I have my flu jab today, I'm not telling the nurse else she probably won't let me have it.

I have started on the thank you cards this week to send out to all the wedding guests, that's a job and a half! I have to cut 100 pieces of A4 in half with the smallest scissors ever as Pete broke the big ones when we were opening all the wedding presents. Then I have to write in them all and stick them into some other card, see what I mean?! I can't let Pete help me, I can't trust him to do it properly...!

RIP Mobile Phone

Since I got back from our Honeymoon I have had a headache every day, not necessarily a full blown one but a definite ache there constantly. As you can imagine this is not very nice and I am getting annoyed at it. It's mainly on a morning and it gets worse when I have a coughing episode, for example last night I was doing my physio and the right side of my head felt like it was going to pop everytime I coughed.
I took some books back to the library the other day and the two second walk it took from the car to the library made me cough alot and then voila I got a splitting headache, all from retuning a few books!

Enough is enough, when 2 cocodamol and 2 ibuprofen are not shifting the pain, intervention is required! So I called the hospital on Monday, I had been putting it off as I don't want to end up on IV's which is my dread everytime I dial that number! I spoke to the nurse and asked her if she could send me a prescription for doxy... whatever its called (my medical vocabulary is amazing I tell you...!), surprisingly she said if the doctor said it was OK then that was fine. Wahoo! I didn't even have to go see them! So I am just waiting to receive that and then hopefully it will help stop the headaches as I am assuming it is infection and inflammation in my sinuses.

I have had to buy a new mobile phone as mine decided to start dying on Saturday. It was teasing me and flashing on and off, my poor mobile, I'd hoped it would survive forever but alas its days are over. I had hoped I could buy the same one. This is a sign of me getting old! I can't be bothering learning new functions on a new mobile and my lovely Samsung D800 does everything I require of it. But no, they don't seem to do it anymore and somehow I have ended up buying a touchscreen mobile which I swore I wouldn't do as Pete has one and I can't use it! I know exactly what happened, it was pink, what more can I say...? So since last night I am the owner of a pink Samsung (I kept with the same make to make my transition easier) tocco lite. We will see how it goes, I can see it been a love - hate relationship!
Does anyone else hate having to transfer all your numbers, photos etc to the new phone? I do! I spent all last night doing it, this is part of the reason I put off getting a new phone for so long!

Alfie started his dog training classes again last week, he did very well. There are some massive dogs in this class, like one of those Akita's and a very bouncy Labrador. Despite been surrounded by giants... Alfie did well for his first session, we are starting clicker training this week. Apparently Chihuahua's don't always take to it (why am I not surprised), so we will see how it goes!
Alfie hurt his back leg again on Monday so I was the owner of a hopping, three legged dog for the day. I was going to video it but felt cruel! He is much improved now, he is not screaming anymore when I try touch the offending leg and he is walking normally again, so I think he just pulled or twisted a muscle. I did spend most of Monday holding one of those heat up rice bag thingys to his leg, that dog doesn't realise how lucky he is to have such a caring owner!

I've started back at the gym after a month of not going! I am planning to join yoga as someone on the CF forum said it can help with your lungs. So my plan is... gym on a Monday, swimming on a Wednesday and yoga on a Friday. We will see how I go!

Housewife Gemma.....!

Had outpatients today, my last one as a single lady may I add!

My fev1 has increased abit to 46% which is promising and my weight is stable (as usual). Apparently my last bloods showed I had a slightly elevated crp level of 39, I love the way they tell me these things and then don't really elaborate on what the implications of this are. I go 'oh right' and they go onto the next thing. Today I saw a registrar who I have never met before but he seemed ok, although he went and got a nurse to watch whilst he listened to my chest. No other doctors do that so don't know what that was about...!

I keep having really vivid and nasty dreams again (mainly wedding related), I assumed this was to due with pre wedding nerves. However then I recalled this happened last time I was on voriconazole so I think it is definitely a side effect. I did ask the doctor about this and he looked at the side effects, there is hallucinations, anxiety, delusions but no mention of nightmares/sleep disturbance so guess it's just me then!

He has given me some ciprofloxin and steroids to take on the honeymoon just incase I start to go downhill or get really wheezy whilst away. I also got a prescription for some salt tablets and some letters to take with saying I am fit to fly with oxygen on long haul and without on short haul flights and another letter saying 'please let Gemma through with all her drugs because she needs them' (not the exact wording!). So I am all ready to go!

My next outpatients appointment isn't until the 23rd October which feels ages away! I'll need a port flush before then though so that will keep my withdrawl symptoms at bay. No seriously, if I don't go to the hospital for many weeks I feel abit panicky, it kind of makes me feel safe been checked up on every few weeks! It might sound stupid but going to hospital and knowing everything is ok is part of my routine in life, so a long break feels weird....!

Alfie and Murphy had a practise run at the dog sitters today, the lady is a performer and was practising singing Abba songs with her friend (who used to be in Emmerdale, trust Alfie to get to hang out with people off the tv!), apparently the dogs sat and watched them which I found quite funny. I took Alfie for walk beforehand to try tire him out abit, he's getting extremely good off his lead now.

This evening I made a fish pie from scratch, I skinned the fish, made the white sauce and the mash potato. It was very nice, quite proud of myself! Getting the hang of this housewife thing hahaha!

Gutwack

I started the Voriconazole on Tuesday morning and then Tuesday night I didn't feel too good. It was weird really, I got the usual blurred vision in the morning about an hour after taking it, this tends to last about 20-30 minutes, it kind of makes me feel abit spaced out and I find myself just looking at the wall intensely!

So Tuesday afternoon my stomach starts to feel abit strange and I thought I had drunk too much coffee! It got worse and so felt like I had forgotten to take some tablets with my food, however I knew I had not. I now have a technical term for this feeling (when you forget to take your food tablets), someone on facebook said it, so from now on it shall be called 'gutwack!'. I felt really sick by the evening and my stomach was twisting, turning and bloated, I also felt lightheaded and nearly fell over when I stood up on a few occasions.
In addition to this when I did my evening physio I coughed up absolutely loads of gunk, thick lumpy stuff, it was never ending! Very strange indeed!
I felt fine the next day so I have put it down to the voriconazole hitting my system and working its magic!

Yesterday I had my hair done as Pete and I are going to his Uncles wedding tomorrow. I'm looking forward to it as I feel like I've not done much since my hen night, plus I can't wait to wear my new outfit!

Apparently Alfie spent all Tuesday barking at a statue in my nana's garden haha! The past two nights Pete has put Alfie's basket on the sofa and Alfie has sat in it watching TV like it's his throne, to add to this Pete has been spoon feeding him yogurt whilst he chills in the basket. Pete pretends he's not soft when it comes to Alfie but behind closed doors it's a different story! Alfie gets treated like royalty! I'm getting sick of Alfie barking at the TV everytime an animal is on the screen, he even barks at the directline advert as its a phone on wheels moving around. He doesn't like the meercat.com advert and don't get me started on the blue cross advert with poor Barney. I know its funny but also annoying at times! lol! We are considering squirting him with water if we tell him 'no' and he continues to bark, DVD will probably end up blowing up though from getting wet!

Naughty Lungs for Sale, Free to a Good Home!

Well I decided on Tuesday I had had enough of feeling rubbish, my chest pains are getting worse, I'm tired all the time like I'm in a daze and I'm getting breathless extremely easily, just walking to the toilet or cooking tea etc and I am having to catch my breath. Its not good!

On Monday I went shopping for my hen night outfit and some wedding stuff, my chest was hurting so much I was walking around in a weird position with hand pressing on my chest to try ease the pain. Monday night I went to see my friend and she doesn't feel very well either as she is working long hours and we both just sat watching the TV with not much to say because we both felt so tired!

I rang the hospital on Tuesday morning and made the mistake of mentioning I had developed a sore throat Monday evening. Next minute she is asking me if I have a temperature or have I been sweating alot. No I haven't but she still said I had to give it 24 hours before I came to the hospital to make sure it didn't develop into anything flu like. This bloody swine flu is annoying me, I need IVs not tamiflu!

Also on Tuesday my mummy and I went to this place called Country Baskets, they are a wholesalers for florists etc and sell loads and loads of vases. Its like vase heaven. They still didn't have what I wanted for the table centre pieces at the wedding but I chose some roman gold type vases and took one to the florists so she can practice how she is going to do the flowers and have an example ready for me on Saturday. I had a proper sleep in my bed when I got home then had to rush around to cook some tea as Pete and I were going to the cinema with his friend to see Bruno. It was really funny but I was trying not to laugh as I didn't want to cough as it's embarrassing and makes my chest hurt at the moment. Don't go see this film if you are easily offended hahaha!
When I got back I had a cry cos I'm annoyed I don't feel well and I don't want to go on IV's so close to my hen night as I will more than likely have a sore arm from the stupid port dressing. I think I am entitled to cry once in awhile and it's my thing when I'm tired, I become an emotional wreck!

So today I went to the hospital (since surprisingly I don't have swine flu) and can you believe my lung function is 47%!!! So it's actually 1% higher than when I had my last outpatients appointment. My sats were 95%, my blood pressure was quite high apparently. The doctor listened to my chest and says there is more crackling where I am complaining of the pain, so at least something is backing up my feeling rubbishness! So anyway I am starting IVs on Friday, this means I will finish them the day before my hen night. I am soooo not impressed! But I want to feel better, I really do feel rubbish, so I have no choice really. However... how am I going to look good in my nurses outfit with a big red sore square on my arm? They are trying these new dressings on my port, I hope they work! They BETTER have ordered them in for me or else all hell will break loose on Friday! If you hear of some girl going crazy as St James Hospital on Friday you will know it is me because the staff have shrugged their shoulders at me and said 'opps we forgot to order them in'. I am a desperate bride and I'm not afraid to use violence!

Alfie and I went for a walk this afternoon, thought I should try make myself do something. I had to sit down quite alot to get my breathe back but that isn't going to stop me walking my pooch. Alfie was very good off his lead and when we came across some dogs (that I didn't see coming) he didn't run into the trees away from them which is what I always dread (I am in no fit state to run uphill through trees to find a chihuahua), he ran to me and let me pick him up, bless him! So I am very proud!

Happy Birthday Pete!

Wow everyone has been posting my presentation on facebook, it's had over 100 views. Glad people like it but I didn't think it was that good! One lady even emailed me asking if she could use it at her work as she works with families who have children with disabilities.

For Pete's birthday I got him some pump/trainer things and a tshirt. Not very exciting but it's what he wanted and I'm quite skint at the moment so couldn't get him anything extravagant like last year when I got him the camcorder. That must mean I have been doing this blog for over a year now, scary!

We are going out for a meal tonight, although we nearly didn't end up going as Pete forgot it was his birthday and organised to play football. duh! Sometimes I wonder if he has a brain in that pretty head of his! I also got him a finance birthday card, only time I will be able to get him one. Next year it will be a husband birthday card and forever!

I have seriously done hardly anything this week, so now I have loads to do today. On Sunday I went for lunch with my two best friends and then we took Alfie and Murphy for a walk. It was a nice walk apart from when one of my friends decided she would drag Alfie across the floor as he was barking at a dog that was bugging us, she said I had to do it to teach him it's bad. I got mad and told her he was my dog and I don't do things like that, for a start he wasn't been bad. This dog was wet, off its lead and was trying to jump on him and Murphy whilst the owners did nothing to stop it. You have a dog 20 times bigger than you trying to jump on you and see what you do! Second the trainer told me Alfie will never be friendly with dogs and we should just walk away, all punishing him will do is make it worse, he needs to learn dogs are not necessarily a threat which isn't going to happen if he gets hurt when he barks at them. I was doing as told by the trainer before my friend decided to pull his lead and drag him across the gravel. My friend doesn't even have a dog and has never had one, so yes I'm really going to listen to her, the expert..........

I also found out my friends have not been invited to a wedding reception next week and I have, probably because I have been chatting to the bride alot about weddings recently and they never speak to her. They have now decided to arrange a night out on the same night and I just got a text inviting me. Erm no... I'm going to the wedding!!

On Tuesday I had my roots done at my mums barber shop, the bleach was left on for way too long as silly customers kept coming in haha! So anyway now my hair is very white and abit straw like, but it looks good! I'm going to leave some conditioner on for about half an hour after I have been swimming today.

I have my first hen night on Saturday! Wahoo! We are going to see Dirty Dancing in London.

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!

Dodging game!

I called the hospital today to ask for some oral antibiotics as I am going to dodge IV's until at least my outpatient appointment. I'm getting a dull pain in the bottom of my chest and my cough is becoming ever more annoying. I'm getting tired so easily, like yesterday I went to the gym and I felt flattened for the rest of the day.

Today I went to order our wedding cake with my mum (Pete had little say in the cake) and then I went to the bridal shop to order my veil. This meant I had to try my wedding dress on again, oh what shame....!! It's still as beautiful as ever, I am going to look amazing on our wedding day if I might say so myself! Then my mum and I went for some lunch then onto JTF to look for vases and ribbons of which they had none suitable. I ended up buying some cleaning stuff for the bathroom, how exciting!

So then I came home and fell asleep, I felt so tired I couldn't focus properly. I've just woken up as the doctor called me back and the pain in my chest is even worse but I'm not in agony or anything, its kind of a dull stabbing, I don't think I'll be going swimming as planned, just too tired. The doctor is sending me a prescription for amoxicillin, he was going to put me on ciprofloxcin but I am going to the lake district next weekend and cipro makes you burn in the sun and so does voriconazole so together i think I will be a walking lobster. He said amoxicillin doesn't actually fight psuedomonas but it will fight everything else and i'm on my nebbed antibiotic so it should keep me going for abit (it's like i'm a car or something!). If I still feel rough he will give me a prescription for cipro if necessary. However I remember the amoxicillin worked quite well at Christmas. Apparently my last sputum sample showed up 'psuedomonas, psuedomonas, psuedomonas, psuedomonas', alright how many times does it need to say it!??!! I get the point! Damn psuedomonas, one day I shall have my revenge!

On another note, Alfie is doing very well at the dog training. He even went up to another dog (the trainers very well behaved dog) and got really close and sniffed it without growling which is kind of a big thing for Alf. When we were practising 'leave', the trainer said Alfie was making it look easy. Well you know I do have a super dog. I shall have him jumping through hoops of fire next!!

Deflated

I'm feeling abit deflated this week after my high last week, I'm not miserable or anything I am just plain lazy and I don't seem to have done anything but time seems to passing. I think it is connected with the weather since it's gone all miserable on us again.

On Sunday we went for lunch at the place where we are having our wedding reception, thankfully the food was lovely, a good job really since we have paid a deposit now! Also on Saturday night Pete took me out for a Chinese, I got all dressed up and it was a nice evening.
I've not really done much and struggling to think what I have done! I met with my friends at the pub on Tuesday night and we had a good natter and I didn't get home until 11pm as my friend who is learning to drive took forever to drop our other friend off and then drive to her house so I could collect my car, the pub is only 5 minutes away from my flat! Yet we were trailing around for a good half an hour, oh the joys of learning to drive!

We had the dog training again last night, the dogs were all been noisy and it was harder than last week but I think Alfie is doing well. I'm going to take him to Pets at Home now as he needs some more biscuits and then we are going to go for a walk, although to be honest I would much rather have a little kip on the sofa. I did attempt this yesterday but I was looking after Murphy and they both kept climbing on me, to them I am simply a climbing frame! They drive me crazy sometimes!

My eyebrows look horrible at the moment, I'm growing them to get them waxed next week and when I look in the mirror it's all I can focus on. They aren't even that hairy, its just the way they grow out funny just to make sure you notice I have untidy eyebrows incase you hadn't!

Book wise I have finished New Moon and onto Eclipse, I am losing interest slightly as Bella is starting to annoy me. She is very clingy and obsessive. However I am still enjoying them, I think the first book is definitely the best from what I've read so far. I watched all the extras on the Twilight dvd the other day including the commentary over the film, ahhh now I can see what I have been doing with my time..... god I need to get out of this flat before I go crazy!!

Dog Talk

We took the dogs to a training course on Wednesday night, it last for 7 weeks, an hour a week. It's at this place called my pet stop and they also have kennels for your dog to stay in if you want to spoil them. You can pay for them to have tv's and go to doggie day camp where they all play in a big pen together, not that Alfie would like that very much!

There were two other dogs in the class and Murphy who may I add barked at the other dogs more than Alfie which makes a change! We did basic things like sitting, sitting and staying, standing up, that kind of thing but only in short attempts. The trainer said Chihuahuas are very intelligent and can figure out quickly if you are tricking them (we did an exercise where we pointed at random stuff on the floor to get their attention, Alfie got bored after about two goes) and they won't do anything if they don't get a treat, other dogs will do it to impress you, not a chihuahua. She also said it is likely he will never get on with other dogs which disappointed me, but we can teach him to not growl etc at them. We have some homework to do for next week, I have to make him sit and stay before I let him out, give him his tea that kind of thing. To be honest he can do alot of it already, we always make him sit before he gets his tea anyway.

Alfie also went to the vets on Thursday morning. He tried to pick a fight with a massive curly haired dog just as we were going into the room. Alfie now weights 2.10kg, he has put 10 grams on the little fattie!!! Everything seems fine, his cough has gone apart from when we went to the dog training he was coughing alot but I thought perhaps it was nerves. We have to give him the prednisolone every other day now to wean him off and see if his cough returns. If it does they may need to put a camera down his throat to try locate the problem.

Went swimming today and remembered whilst swimming I had arranged to go for my port flushing at 3pm so I had to cut my swimming session short and rush around to get there in time. I feel like I haven't had my port accessed for ages, it has been 6 weeks which I suppose is the longest in awhile. When I got there, there was another cf patient at the desk and no staff around. I am never sure what to do because I feel rude keeping my distance, I hardly ever come into contact with other cf patients, the hospital staff are usually very good at ensuring this, as soon as they did see me they ushered me into a room like usual!