Just Write the Prescription Please

Well hello there!

So a little update on moi... my lung function last week was 45% and my weight is *drum roll please*..... 57kg! I swear it must be muscle I am putting on or all just on my bum which is looking bigger and bootylicious, as my waist is not getting any bigger thank goodness. Guess my strength training at the gym is doing the trick! Just call me muscle lady from now on please.... needless to say I feel quite proud of myself at the moment and may even feel a little smirk making its way on to my face.

I did start to feel run down towards the end of last week, I suspect I picked something up when I had my hospital appointment. Hospitals are the worse place for sick people to go! I started to get chest pains, coughing more, more tired and I was needing to do more insulin to keep my blood sugars down. From what I've gathered, diabetes causes a circle of sugar misery. You get high sugars because your chest infection is worsening and then the high sugars feed your infection. So I started on some Ciprofloxacin, upped my hypertonic saline and I'm starting to feel better, although I suspect I may end up having IVs but for now i'm happy to coast along (the bank holiday is coming up after all and who wants to be hooked to IVs if it can be put off?!). I'm at the in between stage: not my normal self and not ill enough to be begging for IVs just yet. I finish my last dose of Azli tonight and then it's my month off, I suspect this may be my downfall....

I only had 10 days worth of Cipro in my cupboard so asked for a prescription for four days worth to make it a two week course. Well the SHO Doctor (junior doctor) I spoke to was not happy I had started Cipro without asking anyone or telling anyone. How long have you been taking it? Who prescribed it? Is it in date? What dose are you taking? In future can you let us know so we can make a decision as how to treat you? Obviously she is new and I didn't want to be nasty, we all have to learn after all, so I was an obedient patient and answered her questions:

'I've been taking it since last Friday', 
'I'm not sure who prescribed it, I get it prescribed a lot, it was in my cupboard along which lots of other medications I have as back ups',
'yes I checked the expiry date, I think I'm capable of that', 
'I'm think it's the higher dose since I'm an adult and have two types of chronic Pseudomonas',
'yes in future I'll call the busy CF ward and ask to speak to a busy doctor to see if I have permission to take a tablet that they have specifically prescribed to use for this given situation so I don't have to wait for it to arrive in the post'

I didn't really say all that, like I say, they need to learn. Quickly if possible. Learn I've had CF for 28 years and know the protocol better than them or what works for me and I know how my body is feeling..... as you can tell, I'm not too keen on cocky junior doctors. Just write the prescription please.

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!

Glowing Report!

I'm really happy to say that yesterday my lung function was 49%, my weight 55.8kg and my oxygen saturation (sats) levels were 99%! I can't remember the last time I saw figures like that, for months and months now my sats have sat at 93-95% and that was just normal for me, sometimes getting even lower when I felt unwell. So to see them at a normal number is great and for my lung function to be almost hitting 50% is amazing. My weight is back to pre pneumonia 2011 weight, it just shows how long it can take to put that weight back on once you lose it. I have started a 10 day course of IVs which sounds stupid given the numbers, but I have felt a bit iffy the past week or so with my energy levels and I started to develop a tickly cough and chest pains so decided I wanted to have some before we start fertility treatment again, rather than possibly end up needing them half way through.

So what I have been doing differently? Well I believe the main contributor is my new nebulised antibiotic Azli, also known as Cayston, also known as nebulised Aztreonam. I had high hopes for this nebuliser as lots of people have said how amazing it is and I believe them now! At first it made me really wheezy however that went after about 10 days, it does re appear every so often though. Then I started to be able to exercise more than usual and before I knew it I was going to the gym 3 times a week and doing 40 minute sessions involving about 25 minutes cardio and the rest doing weights. I'm feeling I can really push myself at the gym at the moment and I've noticed my heart rate has decreased too, my pulse at rest is in the 80s at the moment, I pretty sure it used to be about 100. I am still very breathless when exercising however I do have less mucus which is what the physio believes has helped bring my sats up and why I think I a finding the gym less hard work.

Then I have also started having insulin with lunch and tea and although I still need to learn how many units I need and not getting it right all the time, I'm getting there slowly. I'm having 2 units with lunch and 3-5 units with tea. I'm having lots of hypos (low sugars) which is not nice, basically every time I exercise and if I have breakfast early or tea late. It's easy to say, well eat your tea earlier or have breakfast later, but that isn't always possible!

So health wise I am doing well at the moment which makes me realise how important it is to be compliant with treatment and to be involved in your CF care. I know for a fact if I worked this would not be possible, I haven't worked for about 5 years now and I'm finally starting to feel I understand my CF and know what my body needs and I'm getting the balance right of rest and treatment. Some days I am so bored and fed up, I feel so useless and pathetic that all my day consists of is CF related activities and attempting to do household chores which mostly Pete ends up finishing off anyway!

I look back to when I first joined the CF community, my health was worsening and I was facing giving up work. I made lots of friends on-line who I felt understood me better than people around me, it was also when I started to take an interest in my health and ways to improve/stabilise it, can you believe I didn't even used to wash my nebuliser equipment?!

Lots of my friends have now either had lung transplants, need lung transplants, have passed away or their health has deteriorated. People that had the same lung function and health as me are now needing lung transplants which scares me but also makes me feel proud that I have managed to avoid this so far. CF is unforgiving, I work really hard to stay stable. I'm not admired or called brave, nobody calls me an inspiration, because in order to be those things you have to push yourself to work a full time job or go above and beyond what your body is capable of and I'm not willing to do that in order to end up dead or dying like lots of people with CF do. Lots of people probably think I'm lazy or one of those scrounges you read about in paper, on benefits, didn't you know the whole country hates people like me at the moment? Sometimes I feel guilty if I go out for a meal out as the papers make me feel like I shouldn't be able to afford my electricity and gas, never mind a meal out, because I am in receipt of benefits. However then I remember my husband does work, so we are not complete scrounges...!

Having CF at my level of CF is a job in itself, I have to do a hell of a lot to stay alive, some people with CF don't, they manage to get on OK with minimal extra effort. I'm not implying that people with CF who did push themselves are in the wrong, or that everyone who needs a lung transplant brought it on themselves. It's such a fine balance between having a life and looking after yourself, nobody gets it right and even if they do sometimes there is nothing anyone can do to prevent that downward spiral, I'm sure it will happen to me eventually. I just feel lucky that so far I'm doing OKish, I have a supportive husband to help me and I'm in a situation for the time being where I can concentrate on my health and not have to run myself in to the ground with work. This might all change through if I don't qualify for ESA though and that is why I am really scared of what may happen in the next few weeks. I really wish the government and society as a whole understood long term conditions more accurately.

The Dreaded Diabetes

I officially have CF related diabetes, lucky me! I was admitted in to hospital last Wednesday to start insulin treatment and stayed in just the one night which was long enough, I swear its enough to make you go crazy. I don't want to be nasty about my CF team as they are brilliant but staying in hospital is hard work as your routine is totally ruined and you are constantly waiting for people to come see you and do not have any idea when they may come in which makes it difficult to do your treatment or get a shower or get breakfast etc. I woke up at about 7.30am and nobody came to see me until at least 10am, I had no idea if I should get my own breakfast or if I was going to be offered a fry up (they do provide fry ups), if I needed my blood sugars checking, if a physio was going to come and see me since I wasn't in because of my chest etc, its just difficult for someone like me who likes routine and to plan the day ahead. Then when someone came to see me she asked me if I wanted breakfast, (erm no its 10.15am I went and got myself some ages ago...) I got in trouble for not having my blood sugar tested beforehand which nobody had told me I needed to do!

So I'm home now and doing OK with the insulin. The needle is 5mm so small compared to the fertility injections I've done in the past and I'm alternating between injecting in my thigh and my stomach. At the moment I'm having insulin with my lunch and tea. I started at two units for both which is a small dose but I've now upped it to three or four units with my tea. I'm having to take my blood sugars before every meal and an hour and a half afterwards plus any time I think I'm having a hypo (where your blood sugar goes too low) which is quite often. For example on Tuesday I had three hypos! I have to learn to recognise hypos as you are not allowed to drive when having one and they can be dangerous if not treated. It's quite easily really since I can't see, concentrate or think properly when having one and I feel shaky and dizzy, so I wouldn't want to drive when having one anyway! I've had to contact the DVLA to let them know I have diabetes and have filled in a form for them regarding my treatment etc.

I remember not understanding why people with diabetes have hypos as isn't diabetes when your blood sugar goes too high (which is called a hyper)?! Well diabetics get both, the aim is to try have blood sugars between 4-7. Hypos can be caused by the insulin injected and then also my body creates insulin at stupid times when it shouldn't, like 2 hours after I've eaten. Also exercise (which can be just walking or rushing around) can cause hypos and not eating for long periods of time. I seem to always get them when I have breakfast really early, for example I had breakfast at 6am yesterday and by 8.45am I was having a hypo, it's totally stupid and so annoying especially when I'd had porridge which is supposed to release carbs slowly!

I'm not enjoying have to do blood sugars and insulin when eating out, I seem to have so much stuff to pack when ever I go anywhere. My bag is just full of tablets and snacks (to treat hypos) and needles etc. Then if I have a dress on I have to go to the toilet to do the insulin as I don't really want to be pulling my dress up in front of everyone!

I'm also doing Azli (Cayston) nebulisers in replacement of Tobi, which is three times a day and I've started doing my hypertonic saline three times a day when I can, as my chest is always really full of mucus by the afternoon. So I have to plan for that as obviously they have to be spaced apart and I'm starting to get really frustrated with how much I have to plan and prepare to do anything at all! My whole day seems to be CF related and I'm really feeling fed up.

So in a day I am doing nine nebulisers, two lots of physio, insulin and at least six blood sugar readings, all my daily tablets plus tablets whenever I eat, having to treat regular hypos and trying to go to the gym at least three times a week. Thankfully my weight is great at the moment (55.5kg) so I'm off supplements for now!

I am also having to apply for ESA (employment and support allowance) which is the replacement for Incapacity benefit which is the benefit you received if you are unable to work due to a medical condition/disability. So instead of just moving me over they are making me apply for ESA and I am terrified I'm going to lose this benefit as I've heard the assessments are unfair and they just assume you can do something on a regular basis if you don't mention it or do it once. Examples of some are the questions are 'can you lift your arms above your head', 'can you pick up a penny', 'can you cut up your food', 'can you learn new tasks' there doesn't seem to be anything about having low levels of energy or having a heavy treatment regime to fit in your day however there is a section on walking which seems more appropriate for my condition. Anyway I've done my best to tailor the answers to the questions to cover my illness and will have to hope its enough.

I asked the doctor I saw two weeks ago to write me a letter of support and she referred it to the social worker who I never see so not sure why she did that, so she wrote me a letter which if I'm honest was pretty poor, I think it was just a standard letter, after all she doesn't know me. She put I did my treatment 'most days' and I go to the hospital to be reviewed every 6-8 weeks which is totally untrue, at the moment it's once a week! So I have asked a different doctor who knows me better to write me a letter which I haven't seen yet but I'm hoping it's more helpful. I need to post the form today as they only give you three weeks to get it all filled in and get your support letter and it needs to be there on Monday, so Pete is having to drive to the hospital to pick up the doctors letter. So I've been rather stressed by it all!

Naughty Blogger!

Oh dear naughty blogger! *smacks hand*

In my defence I've had a rough start to the year with our first IVF cycle with our surrogate ending with a chemical pregnancy (see surrogacy blog for more details). So my head has been all over the place, one minute I thought I was going to be a mummy and the next minute I wasn't. Anyway we are going to be trying again very soon and I hope to have better news on that front next time!

So it has been my birthday and I'm very quickly heading towards the 30 marker! At least I'm an even number now, I'm slightly strange I know...!

Pete and I went for a short trip to the lakes after our bad news regarding the pregnancy, to spend some quality time together, alone and away from everything. I know i really needed it, I'm not sure about Pete. Amongst other things, one thing I hate about not working is the loneliness and troubles it brings. Sat in the same building day after day with only a dog and your thoughts for company. It's dangerous and I really, really want it to start getting warmer so I have the ability and will to get out of the house more often! It's simply too cold to venture out very often, its not worth it with the coughing and breathlessness it brings.

Last Monday I went to see Girls Aloud, yep, fourth time! I think I may possibly have seen them every time they have done a tour. I also booked tickets with my friends last night to go see The Big Reunion tour in May. If you haven't heard about this, it is bands from the 90's reuniting like 5ive, 911 and Atomic Kitten and putting on a massive cheesy concert, it's going to be great!

In CF news I have been told I need insulin treatment and then been told actually I might not do. It's all slightly confusing and annoying and has been dragging on since October! My gluclose tolerance test last October came back saying I have mild diabetes, so I monitored my blood sugars for a week and the dietician decided she wanted me to wear a constant monitor for five days. A small catheter is put in your stomach by using some kind of stapler device (really small needle) and then a small probe is attached which constantly monitors your sugars. You still have to prick your finger four times a day to check the monitor was working properly. You can still shower and even go swimming with this device attached to you so it's not too bad to have attached. I then removed it on my own and posted the probe back to the hospital. Here it is

 I then caught a cold and as usual started to get chest pains, was sleeping lots and had very little energy, after taking oral Ciprofloxacin for a week I went to the hospital for a check up. My lung function was slightly down to 40% so nothing major and the consultant decided to have a good look at my medical history and test results whilst I was there. He decided I could need insulin looking at my results and he wants to try me on a new nebulised antibiotic called Azli (nebulised Aztreonam) rather than having Tobi (nebulised or inhaled Tobramycin). He said I needed to be admitted to start the insulin and he wanted me to have IVs on the ward rather than home IVs to get some rest as I looked stressed (I was). So I was put in the waiting list and said to wait for them to call me. 

After a week of waiting I felt much better and decided I didn't actually need IVs afterall, looks like two weeks of Ciprofloxacin had done the trick for once, seriously, its a miracle! So I called to let them know and turns out my name wasn't even on the board, someone had forgotten to put me on! 

The dietician said I still needed to come in to start insulin as I needed to be monitored. Fast forward two more weeks and several phone calls later and I still didn't have a bed due to lots of emergency admittances and I was getting rather annoyed as I wanted to start the damn insulin and also the nebulised Azli.

The main CF dietician who was now back from her holidays decided she wants to retest me as the probe didn't collaborate very well with my own monitoring. She was very apologetic and explained it seems there has been a lack of communication and misunderstanding with what was happening with me. So yesterday I went for the monitor fitting again and to try the new Azli nebuliser.

She explained everything to me and I will try to explain in how I understood it however I do find the whole blood sugars thing very confusing..... I do get high sugars (over 10) but not really high and not in any clear pattern, I also get low sugars (under 4) so she is worried if I had insulin I would get even lower sugars which is dangerous. If I do need treatment they need to work out what type of insulin I'd need, I didn't even know you could get different types! My HbA1c (a measurement taken from your blood) is 48 which is above normal but a good number for someone with diabetes (apparently the aim is between 48-58). So once they get the results from this monitor they are going to decide what to do with me. 

Diabetes is something that many people with CF develop and is called CF related diabetes (surprisingly!). From what I've read it's a combination of type 1 and type 2 diabetes. Mucus in the pancreas damages the cells that produce insulin over time and the body becomes insulin resistant due to chronic infection.

So I go back in two weeks to get my results and pick up the Azli they have ordered for me as I tolerated it fine (I can't get if from the GP as it's too expensive).

Past Few Weeks

I've kind of been putting this blog off as I couldn't be bothered with it but I suppose I should post an update for anyone that still reads!

I ended up on IVs again as I caught a cold which it seems is my enemy! I called the hospital and they put me on septrin at first to try stop me needing IVs, I drove to Leeds and picked up the prescription, got the tablets from the chemist. I decided to flick through the leaflet quickly before I took it as I've never taken septrin before and like to know what lovely side effects I may experience, so I know its the tablets causing it. I didn't get past the first section of the leaflet as I discovered septrin contains trimethprim which I have on my notes as been allergic to. I have a memory of vomiting in my Beauty and the Beast slippers as a child, my mother cannot recall this. I was unimpressed to say the least so called the Doctor who said 'yes I remember reading it in your notes but I forgot', wow good to know. Anyway she suggested I take one anyway and see how it went as it was a long time ago and it wasn't a serious allergic reaction. There was no vomiting so that was a bit of good news.

The septrin failed me and four days later I felt like I was at deaths door, I was getting out of breath talking, was so tired and achy and my sputum was going really thick and dark green. On the Monday I waited until our cleaner had done the bedroom and and then crawled in to bed, I was fully clothed with slippers on and was under the duvet and still shivering. I had to take Alfie to the vets as he had been walking on three legs all weekend so dragged myself out of bed and somehow made it, luckily Alfie had just pulled a muscle, that dog is a serious whimp! I decided whilst in the vets I was indeed going to die and called the hospital to tell them I was feeling very unwell so they wanted me to go in and see them. I went to my mums where I proceeded to cry as I was fed up and could not face driving to the hospital and struggling to get a car parking space and walking from the car to the ward. So my mum took me thankfully and gave me some pringles to cheer me up, my mum had only just come back from holiday so was pretty tired herself bless her!

I had a temperature of 38 degrees (I think it was 39 degrees the next day) and since I'd only had IVs two weeks before and I confessed I would struggle to do home IVs they decided to admit me in to hospital. Except they there were no beds on the CF ward and they couldn't locate me one on the respiratory ward so I had to go back home and wait for them to call me. Which they did the next day so off I went with my lightly packed suitcase (I wasn't planning on staying long). They decided I might have the flu so started me on tamiflu, they also put me in isolation so I couldn't infect anyone else. 

I went in on the Tuesday and it was my sister in laws wedding on the Saturday, so as you can imagine I was extremely unhappy at this turn of events as I'd been looking forward to it for ages and I was also supposed to be a witness. I told everyone who came in to my room that I wanted to go to this wedding and could I go on home IVs or go out for two nights? (the wedding wasn't local). It turned out I did not have the flu, just rhino virus (the common cold) and my temperature was coming down slowly so they agreed to let me go on home IVs on the Friday as I was feeling a lot better and felt I could manage. I was going crazy anyway as I wasn't allowed out of my room, even to use the ward gym and there weren't even any windows in my room to spy on people! 

The wedding was great, I didn't exactly feel like partying and had lots of treatments to fit in but I managed it and I was there which was the main thing. I went to a wedding and fitted in three lots of physio, all my nebulisers, three lots of IVs and an afternoon kip so I was quite proud of myself! The hotel had a fridge they let me use thankfully and I had to use a jug to wash my hair as the shower wouldn't lift down, all these little things people don't realise you stress about!

The rest of the week I spent hidden under a sleeping bag on the sofa watching lots of ER, then I decided a few days before I was due to finish my IVs that I should get out and about. It's sometimes difficult to tell if you feel better when you are lying around all day, especially with all the side effects from the IVs.

When I went to finish my IVs my fev1 was 45% which is the best it has been in ages so I am really happy about that! I managed to keep on my weight through having supplements so I'm practically back to normal now. The only complain I have is that I keep getting mucus in my throat especially when I lie down and I keep waking up because I can't breathe! The physio thinks this might be coming from my sinuses, so hopefully will get better as my cold goes. I also had my flu jab when I finished my IVs, the earliest my GPs could fit me in was the 31st October and it's just easier to get it done whilst at the hospital.

My glucose tolerance test says I have mild diabetes so at the moment I ma having to monitor my blood sugars before I eat and an hour and half after I've eaten. I don't know much about diabetes or what the blood sugars mean, the lowest so far is 3.2 and the highest is 17.6, I know that is higher than they should be but no idea what my fate is going to be! I hope I don't have diabetes because my fingers are already sore and it's just another thing to make eating even more complicated than it already is with these stupid enzymes! I seriously don't know how much more treatments I can fit in to my day and still have some form of a decent life! I might actually cry if they tell me I have diabetes.

Pete managed to raise £200 for doing the Great North Run which we donated to my CF Ward last week, so thanks to all those that donated!

Here are some pictures from my sister in laws wedding, we didn't get many! She looked gorgeous anyway which is easy for her since she does all the time!

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!!

Wee, Blood and Poo plus Other Things Too..!

I can't believe I finished my IVs over a week ago and haven't updated on here, bad Gemma!

Finished my IV's last Monday, my lung function was up slightly at 43% although it was all a mess really. When I started my IVs my lung function was 38% but then when I ended IVs the figures didn't match and the physio discovered that when I started my IVs I'd been put into the system as male! Males should hold more air in their lungs than females so when my percentage was worked out, it was lower than it actually was, it was in fact 41% at the start of my IVs.

I had lots of blood taken as they did my annual blood assessments. I had to fast from 9pm the night before, why when you can't eat do you want to eat everything?! They took about 30 tubes of blood, they test for everything such as if my blood clots properly, my vitamin levels, iron levels etc. So that was needle number one in my arm (they can't take the blood from my port for some reason). I then had to drink a pint of the one of the worst drinks in the world, its basically glucose and it makes me want to be sick. Even worse you have to drink it within 5 minutes, just thinking about it is making me feel sick! Then you wait an hour and they take some blood from you. So this was needle number two, apart from the vein wouldn't bled back so she had to try somewhere else, so that's needle number 3 and in my wrist which is nice and boney so not the most pleasant place for blood taking. Then you wait another hour and they take some more blood, so needle number 4 in my other wrist. Needles don't even bother me that much anymore to be honest, the little ones for blood are only a prick, I don't even mind big ones that much if they are going in my arm, there are worse things in life. I'm not sure how I'd feel about having needles in other areas though! After this blood test, you can finally eat!! This test is to check you are not diabetic, its called a glucose tolerance test and I got my letter today to say it came back fine and I don't need to be tested for another year. Yeay! I also had a bone scan whilst on my IVs and I got a letter the other day saying my bone density has slightly improved since my last scan, so that's good news!

I also had a chat with the Doctor about my bladder problems, I have two problems really. I go to the loo far too much, up to six-seven times during the night and many more during the day. I also have stress incontinence, this is a polite way of saying I sometimes wee when I am coughing hard. It's not nice, its embarrassing, even talking about it to a physio and doctor, I think that's why they have a nice name for it! It's very common in CF though and they have started asking patients about it more often as they know they are too embarrassed to bring it up. The doctor is not sure if my two problems are related or not, if I have stress incontinence this means I go to the toilet often to try prevent it, so before I do my physio, before I go out anywhere etc. This could mean my bladder has reduced in size and therefore I need to go to the toilet more often. The stress incontinence could also be irritating my bladder. Or I could have a bladder problem that I need to see a specialist about.

I have a leaflet with some exercises to do, that was fun practising doing them with the physio...! They are exercises to try and strengthen my pelvic floor muscles, so that when I cough I won't have a problem! If they don't help then they will refer me to a specialist. However now I know I should be going to the toilet less, I have been doing so and I think I am already improving slightly. I keep forgetting to do the exercises but try to remember, 4-6 times a day is a lot to remember amongst everything else!

Here are the exercises for those of you too afraid to ask your CF team!

Type 1 -Basic exercise, can be done in any position

-Squeeze around the back passage as if trying to stop wind escaping, at the same time squeeze in front as if trying to stop the flow of urine
-You should feel a squeeze and lift, a drawing feeling inside - this is a pelvic floor contraction
-Hold this squeeze and lift for a few seconds (up top 10) then relax, repeat a few times (up to 10)

Type 2 - Quick contraction

-Do the same squeeze and lift, but relax immediately
-Allow a few seconds for the muscle to relax completely then repeat up to 10 times

You must do both types 4-6 times a day.

Do not exercise by stopping the flow of urine in midstream; this can affect the normal working of the bladder.

Bladder Advice - Aim to empty your bladder no more than 7 times during the day and once at night, avoid going to the toilet 'just in case'

Since I finished my IVs I haven't felt back to my normal self to be honest, I'm still tired and very breathless at times. Yesterday was terrible, however I have had some problems with my nebuliser as the company are idiots and don't send me disks in time (that you need for the I-neb to work) and I have had to miss my nebulisers. Luckily a CF friend saved me (thanks Woody!) and posted me a disk to keep me going and I now have the disks from the company after ringing up and having a 'talk' with them. I also still have constipation, I've had it on and off now for about 4 weeks. I can't seem to shift it (literally haha), every time I reduce my movicol dose to my usual dose it comes back and I have to up my dose again. I don't think this is helping with how I feel as it makes you feel so sluggish and bloated and even sick at times. I think I'm going to have a higher dose for another week and then try and reduce it slowly again. I can't decide if it's worse to become reliant on movicol or to become blocked up!

I went swimming last week and managed 22 lengths, so was pleased with myself. But haven't felt up to it this week, I'll go to yoga tomorrow and hopefully next week I'll feel up to swimming again!

Sorry if this post has being too informative about particular areas, but at the end of the day this is a CF blog and people with CF have problems with practically every part of their body. Most of these issues are not suitable for small talk... if you don't have CF and are reading this, be grateful it's not you who has to describe your poo to a doctor, talk about your toilet habits with them or inspect your sputum with the physio. For people with CF it's quite normal and required, so I guess we become accustomed to it!

First Knitting Projects

Last Friday I had outpatients, it went OK. My lung function was fev1 40% fvc 51% and my weight was 56.8kg. The dietitian gave me some long speech about how putting weight on was good and all studies show people with CF who have better weights do better overall, she said the ideal bmi for a female with CF is 22, mine is just over 20, I can't imagine it being 22! I told her I had no plans to loose any weight and wouldn't know how to anyway so she can relax!

I told the Doctor about my aching and bladder problems, he did a few things with my legs and basically has no idea what could be causing these things. My last glucose tolerance test a few months ago was fine so he doesn't think its diabetes. I did a urine sample and I am due my annual bloods so they are doing those next time. Annual bloods is where they take loads of blood and test them for almost everything or so it seems! You need to fast beforehand though so they couldn't be done that day. I had my port flushed and they did take some bloods to test my CRP (measurement of infection) and glucose (sugar levels) to check everything is OK, my port bled back! Yeay! I have also been referred for another bone scan as since my last scan showed some deterioration, they wanted another test done in 6 months.

At the weekend Pete went to Germany for a stag do so I was on my own! I tried to make plans so I wouldn't be alone and bored and so on the Saturday night I went out with one of my friends. We had a really good night but the next day I felt so tired I had to cancel going to the cinema with another friend. I did manage to go to a barbecue at my mums but when I got home and had to rush around to do my physio and get ready for the cinema, I couldn't face it!

I've felt quite crappy all week to be honest, I feel tired and more mucusy than normal. Whenever I go on nights out it always dries up my chest so everything is difficult to shift and makes me tired, people don't believe me and say its just a hangover, but I don't think hangovers last a week! I'm not really sure at the moment if I have something developing or have caught something or if its just repercussions from Saturday or just the weather!! So I'll have to just wait and see.

I missed Pete so much! I'm never letting him go away again haha! He brought me back a fridge magnet and a little yellow soft top mini just like the one we used to have! I miss that car so much!!

On Wednesday we went over to see Freya and I can finally reveal my first knitting projects! I'm glad to see the back of that blanket, things were hectic on Monday as it still wasn't finished and then when I washed it, loads of the stitching needed fixing and I just wanted to chuck the damn thing out of the window! But it looked good in the end and I hope Freya likes it! I also did a cardigan, see pictures below. Freya is lovely and her mum is doing well and looking far too good to say she had a baby a week ago!

Blood Sugars and Bones

Last night we had a meeting with a lady from Surrogacy UK, this was the final thing we needed to do before becoming members. It went really well and she was really nice and we should hopefully be members by next week!
The meeting was in Preston at about 7pm so I had to do my physio in the car which was a pain but needs must and all that. I did my pulmozyme on the way there and then my saline and physio on the way back, then did my tobi when we got home. I just made sure I had bags to put the neb chambers in once used, as the excess liquid spills out of them and gets everywhere! I also took a lid for my sputum pot, best to be safe in a car, you don't want a code green situation on your new cars seats! When we drove back it was dark so at least passerbys weren't looking at me thinking 'what the heck?!'. Pete was driving I must point out, I can multi task but driving and doing nebs and physio at the same time is taking it abit too far....

Don't be mistaken that my regime dilemma was sorted... Of course not! I had a glucose tolerance test today which meant I had to fast from 9pm last night, well we were still sat in the lady's house at 8.30pm and I hadn't had any tea because I left home at 4.15pm to collect Pete from work and then head to Preston. So we left just after 8.30pm and were going to get something from a service station which I wasn't too happy with since it would be my last form of food or drink (apart from water) for 14 hours. We pulled into this pub at about 8.40pm that served food and they had a carvery on, so it was self serve, wahoo! Talk about luck!

So I had the damn glucose tolerance test, it's one of the tests I dread. I laid in bed last night remembering the taste of the stuff you have to drink and it was making me feel sick. You have to get there for 9am, then the horrible drink has to be drunk within 5 minutes, the nurse watched me as I told her I was going to pour it down the sink and she didn't trust me. Then you wait an hour. Have your blood taken. Wait another hour. Have your blood taken. Then you can eat! This test is to see if you have developed CF related diabetes, the drink is basically glucose I think, then they are taking your blood to see if your body can cope with it.

My bone scan results were okish, they are worse than last year but better than the first scan I had when they put me on medication to help strengthen my bones. Apparently anything above -1 is normal and I'm at -1.6, on my first scan is was -2.2 and last year it was about -1.4 (I cant remember the exact numbers). I have osteopenia, so it's lower than normal but not osteoporosis which is under -2.5 according to Wikipedia.

My lung function is 42%, so higher than when I finished my IV's, and my weight is 54.55kg. So the doctor is happy with me, he thinks I over did it and that's why I have felt tired and weak. I must admit I am feeling better this week, so all the signs are it was nothing serious. Yay! Had a port flush and was good to go, came home and scoffed my face because I was sooo hungry! :o)

Signing off for Christmas

This is going to be my last blog before Christmas, So I wish you all a very Merry Christmas and hope Santa stops by your house!

On Sunday Pete and I took Alfie for a walk in the snow whilst it was still coming down, there were people having a snowball fight in the middle of town and everywhere was just covered, it was so Christmassy! Alfie doesn't mind the snow as long as he has his coat on to keep him warm, he was jumping around in it and sniffing it. Pete and I wrapped up well, I even put a pair of tights on underneath my jeans, so we were nice and warm too.

We went to a Christmas carol service at the church on Sunday afternoon, it wasn't in the actual church but at the centre next door. The church gets extremely cold and in winter they only hold the big services in there. Not many people turned up, probably due to the snow and the pianist wasn't there either! You try singing songs you don't know with no music! She turned up just in time for the Christmas songs (we sang some advent songs first) and it was nice to sing some carols. We also had some mulled wine and cakes etc. Pete and I are planning to go the afternoon service on Christmas Eve, the main service is at 11pm but we will be at my nana's party then.

We finally have our wedding album so I have been lugging that around with me (it's very heavy!). I took it to the caroling service on Sunday to show my Nana, Aunty, Cousin and others, and then I took it with me to the hospital on Monday to show as all the staff as they keep asking me about it.

The news from my hospital visit is good! My fev1 is upto 43% so that's an 12% increase in about 3 weeks, my fvc was also up about 400mls which according to the physio mean my lungs can hold just over an extra cans worth of air, that's pretty impressive! My weight is also up to 54kgs although both the dietitian and I agreed this may all be poo because I am constipated.......!! I do think I have put some on though, well I hope, to get her off my back!

So my plan of action is to come off the skandishakes until my constipation is sorted and then go back on them and only take 2 nutrizym instead of 3 or 4. I have to take 3 movicols a day to get things shifting...! If it happens again she will try me on a different calorie shake.

I told the doctor and physio I am tired of my lung function dropping every time I come off the voriconazole and then going through the motions of going on IVs, them not helping then finally going on voriconazole, so it taking weeks before I feel better. The physio explained they have to try other things first that are less toxic as they have patients in their 40-50's who are now having problems from the toxic medications and she says they plan on treating me for many decades to come (which is nice to know!). I am staying on the voriconazole for 2 more months as long as I can cope with the side effects which I said I am willing to do. We looked the side effects up and apparently messing with blood sugars is one of the side effects, also there is dizziness and vision distortion. I then have to come off the voriconazole for a month and then go back on it for a month and keep that cycle to see if it keeps me stable. I wish they could just give the fungus' a good blast and get rid if them completely but I know they can't as the fungus' have taken over too much.

On Monday night, Pete and I got stuck at the bottom of a hill after trying to go visit my Nana who wasn't even in! To rub it in a golf VW drove up the hill no problems whilst we sat there waiting for my dad to come and rescue us. My dad drove the car and Pete pushed and got it up fine, so when we went back later we just parked at the top of the hill and walked down, it was not much fun walking back up but I lived...!

Eskimo Alfie!

Alfie and I went for a nice walk on Friday in the snow, Alfie got to wear his new waterproof, snuggley puffer jacket. Here he is modelling it before our walk

Here we are on the walk, the coat held up well! Alfie didnt get all wet and miserable, and we walked for about 20-25 minutes. Amazingly I hardly coughed, sometimes I think its gets so cold you daren't breathe in heavily enough to do a cough and once you start you can't stop so best to try not cough in the first place!

On Friday at about 4.30pm I attempted to drive around to the estate agents to drop a few things off, however couldn't get my car out of its spot due to the ice. So I had to walk to the estate agents (this walk DID involve alot of coughing even though it about a 10 minute walk in total), I was not impressed! I then called my brother and got him to take me in his car to find some grit. It took me forever to get a spade out of the shed, I was coughing everywhere and all the stupid boxes for the Christmas decorations fell on me because a certain husband of mine had not packed them in properly! Anyway in the end we got 3 buckets worth from a grit box and my brother kindly put 2 buckets worth on the ground so my car won't get stuck again. I have 1 bucket saved in my flat for future emergencies!

On Saturday night Pete and I went for a meal with the same brother and his girlfriend. I already know his girlfriend, we went to university together and they met at out wedding! Just call Pete and I cupid! It was weird at first because my brother is my little brother (he's 19) and my friend is the same age as me and it is always going to be weird your friend dating your brother... However I have gotten used to the idea now and we had a good time last night so alls good. We saw Avatar, what a fantastic film. You must go see it! Make sure you see it in 3D, it's just amazing!

Now onto the cf stuff.... yawn!

These skandishakes are messing with my system and by system I mean my digestion and toilet habits. I have constipation and are taking 2 movicols a day, theres abit of movement but not much. I have also been taking peppermint oil tablets as I think I had trapped wind, I kept getting spasms at the bottom of my chest and feeling bloated, it seems to have stopped but I am still taking them to make sure it doesn't return.

Now I thought I must be getting constipation because I wasn't taking enough enzymes with the skandishakes, so I started taking 4 instead of 3. But it seems to be getting worse and my mum said that she thought taking too many enzymes can dry out your bowls. So now I think I may have been taking too many. However I am not having anymore skandishakes until clinic tomorrow as I need to discuss this with my dietitian, I do not want to be feeling sick and bloated over Christmas!

I am also still getting the dizzy, light headed spells everyday and I can't find my blood sugar reader thing to see if its low blood sugars or the voriconazole causing it. I think it's the voriconazole as eating when I feel like this does not seem to help. However I have been having a skandishake every morning and its about lunchtime I tend to get this funny feeling, for about 2-3 hours. So it could be a sugary skandishake making my bloods go low a few hours later or my morning dose of voriconazole making me feel funny (which is a listed side effect).

Who knew so many problems could be caused by some high calorie shakes and a tablet?!

no title

Well I finished my IVs today and my lung function has fallen from 47% to 39%, hum weird! They even made me do it on 2 different machines to check it wasn't the machine that was broken, but nope its not broken.

Anyway they are not making me stay on my IVs (thank god), I have to go back in two weeks to see how I'm doing.
It is clearly because I have finished the voriconazole, I know this, they know this but I can't stay on it all the time so we shall fanny around for a few weeks and then no doubt they will put me back on it. This bloody fungus is the bane of my life, there are no drugs for it that I can have all the time as I asked the doctor. There are no studies that show the longterm affects of them and I don't fancy being the case study. I guess the drug company assume a 3 month dose is enough for someone, well no not for moi....

My port looks okish, its miles better than usual however some kind of blister has developed and theres are a few sore looking bits, but still loads better than usual. I've just put some moisturiser on it to try help it clear up quicker, past caring really.

I had my glucose tolerance test as well. I had to fast from 9pm last night and drink the most horrible drink, makes me gip thinking about it. Then I had to wait an hour and get blood taken from my arm (it can't be taken from my port) then wait another hour and get blood taken again. It's so boring, I actually fell asleep on the bed in the room so at least got to have a nap. This test looks to see if I have diabetes. It has to be done once a year or every 6 months if the results come back borderline.

I've been so fed up with this week and not really done much, I'm sick of everyone bugging me, asking me questions about the wedding and hen night. Pointless questions, things people should be able to arrange themselves like their outfits, how they are getting to the meeting spot etc. I can't arrange everything for everyone! I'm sick of feeling tired and just wanting to sleep and I'm sick of not caring about anything, I really don't give a toss about anything. I don't care what I'm eating, what I'm wearing, the fact I'm just sat like a vegetable infront of the tv all day, I don't care that I'm being boring and rude to people. I swear I feel like a robot just doing what I have to do. It's making me get headaches and I am sick of getting those too. It's my hen night tomorrow and I don't even care, two people have dropped out of it now so I have to rearrange what rooms people are staying in and no doubt I will get hassle over that.

I feel like I don't even know why I am bothering getting married because theres just no point and all it's doing is causing me loads of hassle and I'm scared I'm going to feel ill anyway! So there you go not a very good week for Gemma, I'm sure I will perk up in a few days

Stethoscope

It was outpatients today and I had a nice drive over there. When I got there the place was empty, seriously I was the only patient there! I was in and out in less than half an hour! First my weight was taken which was 56.10kg then my blood sugars which were 4.5. Then my blood pressure which I have no idea what it was and my sats which again I have no idea what they were.

Then the physio came to do my lung function tests, always the nerve wracking bit. My fvc was just under 3 litres, it had gone up by half a litre apparently. Sorry I don't know what this is in %'s as she didn't tell me, but I assume it is in the 60-70% range. My fev1 which is the important one was 46%, so it has gone up by 4%, yeay!! Still not good enough though! Remember my target is 60%! I provided the physio with a sputum sample which is no difficult task these days and then the dietitian came to see me. She is happy with everything, she asked me if I was still getting the low blood sugars and I told her it's not happening as much now.

I then saw the doctor, I was in for a treat as I got to see the 'big boss doctor' as I call him, I also saw him last time, lucky me! He had a new senior registrar with him (I think that's what he said he was anyway). He is abit scary sometimes, he also deals with pediatrics so I've seen him since a child so that's probably why he scares me! Plus he knows everything (he does loads of research etc) and you daren't say anything to him incase you look stupid!

He went through everything from all my blood test results (remember I had loads of bloods done when I finished my iv's) and explained it to me. I was abit overwhelmed by all the information but here is what I understood. All my different types of white blood cells are slightly elevated which indicates some infection, this is understandable because I have pseudomonas but they are higher than normal. My Ige level shows how sensitive I am to aspergillus (a fungus on my lungs), if this gets high it shows my body is reacting to it and it needs to be treated. Only to try reduce the sensitivity though and not get rid of the fungus as this is impossible. There is nothing they can do except treat me when I get the symptoms which is when I am put on the voriconazole, like I am now. All my vitamin levels are fine, my vitamin E is abit too high but he says that is ok. That's about all I can remember!

We then discussed my cough and he asked me if it is stopping me doing things. I told him it wasn't really apart from walking as I cough alot and its embarrassing but I can put up with it because I think it's just the cold weather. He asked about my sputum production and I told him I'm coughing up about 20mls with each physio session and some inbetween whenever I cough. He asked if this was normal for me and I said it is now but it didn't used to be, so then he queried if we were treating it as normal for me now and when did I start to go downhill. I replied I have no idea if it is been treated as normal for me! And I think I started to go downhill in my final year of university. So anyway I am staying on the voriconazole for a few more months and he says I should just have my tobi nebs all the time if I think they help me that much, I asked if I was allowed to do this and he said yes. Okey dokey then!

Had some more bloods taken and booked another outpatients appointment for end of May. Then the best part of my day arrives...... The nurse has given me a stethoscope for my hen night! I told her I was going to nick some stuff off the trolley for props and she said here have this and handed me a stethoscope, wahoo!! Its even red! I'm going to look so cool going around listening to people heartbeats, I've already tested it on Alfie and you will happy to know he has a beating heart.

The Dressing Awards 2009!

I'm going to outpatients on Friday so yesterday I stuck some of every single dressing on my arm so by Friday we can look at any reactions I have. I am also going to use this opportunity to see which dressings are the best in certain categories.

The contenders are...! (in order as placed on my arm):

Opsite, Supasorb

Cosmopore E, Mepilex

Dermafilm, IV3000

Tagaderm

Please if anyone knows of any other dressings for me to try let me know!

OK so I can do a few of the categories now...

Most appealing to look at: It has to be opsite, it is transparent but not shiny, more matte. Worst are cosmopore E, its furry! Mepilex, its a funny peachy colour and supasorb which is so shiny and makes your skin wrinkly! IV300 is pretty ugly with it orange edges too!

Most comfortable: Again the opsite or the dermafilm as because they are more matte it means they are softer if you know what I mean? They don't bond to the skin like some of the others and make it all ripply! Least comfortable is supasorb its so plasticy, iv3000 isn't great either, it has pointy, rough edges.

Most hardy: I can't tell you the winner but supasorb is definitely the loser at the moment, it is already peeling off at the edges and it's been on less than 24 hours.

Easiest to put on: Cosmopor E, its just like putting a plaster on, so is mepliex but that's not as easy to put on due to its weird sticky texture. People who have dealt with dressings will know the dressings people like to devise new ways of putting them on to try and trick us! Dermafilm is relatively easy, so is iv3000. Is it me or is tagaderm the craziest dressing to try and put on, yes we all have got used to it now over the years. But if your a tagaderm virgin, it's pretty difficult stuff! Supasorb comes pretty close to tagaderm, it's evil really!

So the Winners are...!

Best Looking & Most Comfortable:

Easiest to use:

Should come with a manual!:

As for me, well I'm not feeling great really. This cough is getting quite bad, its like a wheezy cough, imagine a smoker coughing, its kind if like that but then also productive (phlegmy) at times. I'm getting headaches (I think the coughing might be contributing to these) and I'm sleeping alot and have less energy, for example I slept for 3 hours this afternoon and about 2 hours yesterday afternoon. My exercise tolerance is lower than normal, I'm getting breathless easier and it's making me cough. So overall I'm not too great but I shall survive as I always do!

I've been monitoring my blood sugars like I said I would do. On Saturday morning I felt all weird so took them and they were 3.6, then yesterday I felt weird and they were 3.9. I think they are supposed to be above 4, so now I know this is what is making me feel all light headed and not with it. I did stock up on chocolate to eat when I feel like this, but I kind of ate them all.....! It usually happens when I've been doing something quite active, if I'm just sat at home it doesn't usually happen, I guess because I'm not burning as much energy. This is why I hate shopping, because it always happens then.

Snowy Birthday!

For my birthday I went over to see my brother in Hull with my mum, we were not going to let a little bit of snow stop us! I then had a chinese takeaway foe tea because the Indian takeaway was shut! We also had to get it delivered because the car got stuck!

For my birthday I got some clothes from my parents, a new camera from Pete, some pj's (Is it me or are getting new pj's the best thing ever?!), some socks for my ipod (to put it in, not to wear on the ipod's feet...!), money and some earrings. I also got a cake made for me by my Nana which was delivered by my Auntie and Nana.

Pete and I made a snowman last night which we named Reg, unfortunately his head fell off about an hour after we made him. RIP Reg!

I called the hospital today as I've had a ringing in my ear for about 5 days, it also echoes inside my ear when I talk! I called the hospital because tobramycin can affect your ears and make you go deaf so I got abit worried! I was on tobramycin when on my iv's and I've started my tobi nebuliser since I finished my iv's, which is also tobramycin but in a nebulised form. The doctor says the tobi nebs can't cause ear problems as not enough is absorbed and he says some people can get a ringing from tobramycin iv's, I have to call back if it gets worse or I start to feel dizzy. By the way, is it wrong to find one of the doctors quite cute? I'm not naming which one, I don't know who reads this!

I have felt pretty rubbish today, I keep feeling light headed which I think is my blood sugars getting low. Last week the hospital rang to check up on me as when they took my bloods my blood sugars came back as 2.8 which is low so they wanted to check I was OK. I'm going to take them everytime I feel lightheaded (I've got a monitor thingy to prick my finger with) and then tell the dietitian when I see her next. Usually if I have some chocolate I start to feel ok. People with cf can get cf related diabetes, I'm not sure how it is caused but it's different to normal diabetes, it's classed as type 3. We get tested every year with a glucose tolerance test. One of my tests once came back as abnormal but not abnormal enough to be diabetic, I was classed as having impaired glucose tolerance, kind of half way there. So basically my sugars can go abit funny sometimes, however another test 6 months later came back as normal, so I think I'm just weird! I've also been feeling incredibly tired and achy. Sometimes I get sick of feeling ill all the time, why can't I just feel good and have a normal day?! Am I just a wuss who picks up on everything that's wrong with me? I don't remember feeling like this when I was younger, I feel like an ill person, I never used to think I was ill, it's not a nice feeling. It's even worse to know your probably always going to feel like this, most people get ill and then recover, yes I have iv's and feel better, but I never recover properly.

Heres some pictures from my birthday, on my new camera! In the first picture I'm wearing my new coat

Starting IVs

So today I started my ivs, I was quite upbeat driving there which is unusual as I was quite miserable last night at the thought of started them. I was woken up at 6.50 this morning by the guy delivering my drugs, hes very nice he puts them in the fridge for me and everything.

So heres what happens when I start my ivs. I arrived at the ward after i was very lucky and found a parking space right outside in a disabled spot (this does not usually happen!). As soon as I arrive I am told what room to go into. The ward has a few treatment rooms for outpatients starting ivs and emergency visits and then about 12 rooms for inpatients all with their own bathrooms, tvs, fridge etc. In the treatment room there is a bed, computer and trolley full of things like needles etc. I tend to lay on the bed rather than sit on a chair because then I can chill out! I stay in the room the whole time and they bring everything to me including a cup of coffee if I would like one. This is to prevent patients bumping into one another and causing cross infection, they even shut the door which is abit harsh as I like to nosey at the people walking past! They do the following to me

a) they take my temperature, blood pressure, sats which were 97% and my blood sugars levels which were apparently abit low at 3.7 but they did not seem concerned. They also take my weight which was 57kg today.

b) the physio comes to test my lung function. This is a portable machine that I blow into. I do a slow long blow for as long as I can and then one as fast as I can. Today it would appear my fev1 has improved to 41%, maybe I didnt try very hard on monday. I also give the physio a sputum sample for her to send off to see what is growing on my chest etc. I also gave her another sample which is going to be involved in some experiment, I hope it is not to grow a big psuedomonas bug that will eat people! I also asked her about my physio as now I am doing it twice a day I would like to do other things than patting as when I do it myself it hurts my hand. She is going to order me an acapella, apparently it vibrates as you breathe out. Sounds interesting...! She is also ordering me a new chamber for my ineb for my tobi as I told her it keeps leaking.

c) the dietitian comes to see me, asks me about my poos etc. Its always a pleasant conversation. She told me my weight was fine and to keep up the good work

d) the nurse comes and sticks the needle in my port, whilst she is preparing everything I sit and bite my nails because I hate having my port touched. The nurse today had never flushed my port before so I was very, very nervous, people have missed my port before and it hurts! She got me to lay down whilst she did it and she did it fine. She had to find me my special dressing I have as im allergic to nearly everything, the one I have is called supasorb. Im allergic to tagoderm, dermafilm, iv3000, opsite and a few others. My port bled back, yeay! I dont know what they do with the blood they take form me, I think they are making a clone of me somewhere.... She then connected up my first drug as the first lot has to be administered at the hospital (even though I bring them in from my stock at home) to make sure I dont have an allergic reaction. Im on colomycin and aztreonam again and I change them over myself, I freaked out as she gave me the heprin for at the end and put it on the bed!!! I was like 'erm thats not very hygienic, can you put it on the trolley?', these medical people are useless!! Its so much safer doing ivs at home!

e) doctor comes and sees me, I dont know why because its already been decided what is happening. He was one of these doctors that just goes through the questions, he took forever typing stuff up, god know whats he was writing!

When my drugs have finished going through i am free to escape once I have collected all my extras such as extra dressings for my port, prescription for tablets for my thrush (I always get it when on my ivs) and my epipens for incase I have an allergic reaction (it is a pen that shoots out a big needle and gives you adrenaline, the needle is so big I would have to be literally dying to have the guts to use it...). And thats it im home and I feel tired already from my first dose! xxxx