half way through iv's, yeay!

The nurse came out to see me yesterday, they always see me half way through my iv's to check up on me and change the port needle. She brings a big tool box with her full of all the stuff she needs. She did my weight (56.3kg), temperature, oximeter (96%) and then asked me some questions such as side effects im having etc. I had done her a sputum sample that morning to take back with her to give to the physio to continue being experimented on. I told her about the blood in my sputum, she said if I cough up more than a teaspoon of blood I should ring them, I haven't coughed any up since, so it's ok for now. She then took some bloods from my port needle and then took the needle out. When the needle is removed I have to push the heparin in as she pulls the needle out, this creates positive pressure and should stop blood coming back into the line so prevent clotting, something like that anyway. Anyway the end is result is, im pushing stuff in, the needle comes out, I spray heparin all over myself. She found it quite difficult to get the needle out, suppose its better than finding it difficult to get it in! Heres a picture of the needle, its abit bent which it is supposed to be, this helps it stay in better (abit too much sometimes!). She then cleans the area and puts another one in. The reason the needle is changed weekly is to help prevent infection, personally i think they secretly like inflicting pain upon me!

Poor Alfie had to be locked away in the hall whilst she was here, he was whimpering bless him. I didnt close the door on him, I pulled my physio table across the doorway (on its side) so he could still see me, physio tables can be very handy and be used for many different purposes!

Today I went to collect my prescription from my gps and went to the chemist (is it that time of the month again already..?). When I arrived at the chemist it was nice and empty. I usually drop the prescription off and collect it the next day so that they can order things in they dont have etc but i'm running low on alot of things so I said I would take with me whatever they had today. Then people started coming in and all 3 members of staff were doing my prescription, people kept coming in and there were 10 people waiting including me. Everyone was waiting for about 15-20 minutes, the pharmacist even asked one woman if she could come back to collect it tomorrow as they were very busy. Finally my prescription was ready and they handed it all to me in big carrier bag, I could feel everyone giving me evils as I left..... It's not my fault!

I came home and sorted out my drugs cupboard as it is very unorganised, ive got all kinds of stuff in there like steroids from last year (for my cf of course, not body building) and about 20 ventolin inhalers. I kept the steroids (maybe i'll sell them on ebay..... just kidding!) but chucked some of the inhalers because they were out of date or on their way. Its all tidy now, see how long it stays like that!

I was supposed to be going out for a drink with 2 mates tonight. They have both cancelled on me because they are ill! Makes a refreshing change me not doing the cancelling! One of them has epilepsy and thinks she might be heading towards having a fit. I said we would look a right pair in the pub, me with a needle in my arm and her fitting! The other friend has some kind of stomach bug and has been vomiting all day, so probably best I don't go near her! So I think i'll let them both off for having valid reasons!

My secret drugs stash let me down

Well im starting the feel abit better, the first few days of iv's are always a bi*ch! My cough seems to be calming down abit but i'm still very productive when I do my physio, perhaps even more than I was and last night there was quite alot of blood in my sputum which is worrying because that is unusual for me. Im still achey but not as much but now i've started to itch so have been taking anti histamines. The nurse called last week to see how I was doing and I told her I wasn't too good and achey and my lips felt funny. She said the colomycin makes peoples lips tingle and if I continued to feel achey to call them, she is coming out to see me tomorrow so i'll just tell her then.

On thursday night I sat down to have my pie and chips and my pot of nutrizym had run out so I went to my drugs cupboard, come on everyone with cf must have one of those, a cupboard full of tablets!? Heres a picture of mine, it has two levels. The bottom level is the stuff I use, the top level is spares, supplies etc.

So anyway I went to get another pot of nutrizym and there were none! argh! I rang my mum to see if she had some, she only had some that went off march last year. So I had my tea with the two nutrizym that were left in the pot (I should of had 4 at least). The next day I had cereal with no tablets. I called the doctors and practically begged the prescription lady to write me a prescription, she agreed but it would only be ready for 2pm. So I had lunch with no tablets, whats worse is I had a pub lunch because Pete took me out so it was a big meal. So then we got my prescription and then I had to pray the chemist had some in stock otherwise I was in for a crappy weekend (literally, haha), luckily he had one tub hidden away. Yeay! I was saved! Anyway Saturday came and lets just say that I believe the doctors when they say I need to take tablets with my food, our bathroom was one smelly room and our toilet...ask Pete I think he is traumatised. Too much information? I'm sorry, i'll say no more.

Last night we went out for a meal with my family, it was a farewell meal as my little brother is moving to university next saturday, he is going to Hull to study Geography. My other brother is now going to an only child at home! It's going to be very quiet in that big house!

I'll leave you with this funny story. My mum was explaining to one of her staff about my cf and why I need iv's etc. I was sat there at the time, listening about my mum talking about me, its quite interesting! She asked can't I get some new lungs? My mum told her that there is abit of a shortage in spare lungs and mine aren't that rubbish yet plus there are risks with getting some new lungs such as rejection. She then asked 'well can't she just go private and get some?'. Oh how we laughed, why didn't I just think of calling BUPA? Silly me!

Feeling sh*tty

Well my iv's are doing my head in already. I feel like a sack of potatoes, i'm tired, moody and my body aches to the point I cant be bothered to move. I also seem to have lost my appetite, although I can't decide if it's just because I don't have the energy to make anything nice and I can't be bothered eating something horrible just to have something to eat.
Yesterday I got my pjs on at about 3 in the afternoon and I slept on the sofa, I brought in the sleeping bag as I was cold. I couldnt be bothered getting the duvet as it had loads of my clothes on and I hate putting my clothes on the floor and I couldnt be doing with sorting them out!
Today I got up to do my drugs at 7 then fell back asleep until 10.30, i only woke up because Alfie wanted to go outside for a wee. I then sat around for 2 hours doing nothing really, I did call the hotel to pay our deposit for our wedding reception. We are now officially getting married on the 11th September next year. No terrorists allowed.....!
I then got ready at about quarter to 1, I had a bath because when i'm on my ivs I find it easier than a shower. I dont like getting my port wet because the dressing peels off, its already peeling off near my armpit after only 1 day! Then when it peels off i'm scared of getting the needle wet, cant be very hygienic. Therefore getting a bath is easier plus when your tired its difficult mustering up the energy to stand in a shower, trying not to get your port wet whilst probably coughing......
I then decided Alfie deserved a walk and also decided if I actually did something I might feel better. This was not the case, I was walking with my eyes shut some of the time and felt quite dizzy. I was quite rude to people walking past me smiling at Alfie and going 'aw' etc, I basically ignored them. I'm just a horrible person... I took my jacket off so people could see my needle and then I thought they might leave me alone or excuse my bad manners, that was my theory anyway. I like to imagine what people think my needle is when they walk past me and wonder what is wrong with me.
So after that I came home put my trackies on (yep if the trackies come out its pretty bad) and curled up on the sofa again with my sleeping bag and watched a french film called Amelie which was a very strange film indeed. Yes thats right I can speak french, no just kidding, it had subtitles. The only problem with subtitled films is a) they are usually weird, not your average hollywood blockbuster b) you look away for a second and you miss whats going on, you have to watch the tv all the time. You most definitely cannot eat whilst watching it.
So now i'm just on the laptop a cup of hot chocolate, think I might have pie and chips for tea. Nice and easy, just shove them in the oven. Pete is at some work thing (or maybe having an affair!) so i'm by myself all night. Fun times.....!!

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

Hello my names Gemma and i'm a binge drinker

Yes thats right I am one of the thousands in England that are causing a growing problem, I am a binge drinker. I do silly things when I drink too much and i'm slowly killing my liver. My defence is that this is the first time I have been out for like 2 months, maybe even longer and I never drink when i'm at home, i'm more of a binge drinking kind of girl. I save all my daily allowance units up for one night. Embarrassing things I did on saturday a) wrote on a candle with my expensive lipstick b) sick in the toilets c) fell asleep in the bar on a sofa d) from the photographs it appears I walked around half of the night with my lipstick smudged all around my lips so I look like a clown, thanks 'friend' for telling me...... This is why I only go out every few months because I cant face embarrassing myself more often. I blame the antibiotics, they make me so I cant tolerate alcohol! Oh and I blame those shots I had too... and that wine... and that champagne... and the vodka. Heres some pictures anyway

Roar! I'm a leopard!

Dunno who this guy is, but my friends must have liked his tattoo...!

Can you believe Pete proposed to someone else? Unbelievable! Luckily he said no to Pete, phew!

So anyway today I decided i've had enough of my cough and my large volumes of sputum I am coughing up. On friday morning I had a really bad pain in the bottom of my chest so did some physio and coughed up a big, hard piece of sputum. It was like a rock and about the size of a 5p coin. It hurt my throat coming up cos it was so hard. Ive been doing my physio loads and I swear the sputum never stops coming up, I could keep doing my physio forever and it would keep coming. I also getting really breathless and wheezy. So I called the hospital today and went in this afternoon to pay them a visit. My fev1 is down to 37% and my fvc is 58%, so its not down loads but my lung function doesnt change alot, only by a few %'s if i'm ill. I had to have an x-ray done which may I add was done very quickly and efficiently, I was impressed! Although, when did they stop giving you a thing to hold over your bum to protect it from radiation when you have the xray done? Hopefully the rays may have zapped abit of the fat off my arse.....hehe.
My weight is now 58kg so it is clearly not affecting my weight! I also peeked at my notes (they are all the computer now, its very fancy) and I found out my gene types are both df508. This is the most common types to have if you have cf, im such a commoner!!
Anyway i'm going on ivs on wednesday (sigh), I think I made just about 2 months without having any. The doctor says if I dont improve they will think about giving me voriconazole and steroids for my aspergillus, but they are very reluctant and want to use it as a last resort as they are quite toxic, so want to rule out infection first. She says my psuedomonas levels are quite high 100+ (whatever that means). Im slightly annoyed im having to have ivs again so soon, I dnt actually mind been on ivs, but been on them every 2-3 months isnt a good sign is it?! I feel like its just a sign my health is getting worse.

straight hair

Well i've felt abit better today, I did my voluntary work this morning and then got my hair done in the afternoon, just got my roots done (I doubt you did; but if you thought I was naturally blonde you were mistaken...) and quite abit cut off. When I have it coloured and cut it wont go curly so i have to wear it straight, here is a picture just for you of me with straight hair. It shall be curly again tomorrow because I don't really like it straight

Here is also a picture of Alfie and Murphy after I had given them a bath yesterday because they were both smelly (it was them not me, honest...). They look so funny when they are wet, abit like rats. Some would argue they look like rats all the time, I would have to disagree with that and give that person a nasty look for dissing my babies! After they have a bath they always run around like maniacs and roll around, its so funny. Murphy is having a good shake on the picture! Murphy went home last night so it's just me and Alfie again now, it's quite quiet now with just the one of them.

Im going out clubbing on Saturday and I can't wait! I haven't been out clubbing for months, everyone is meeting at mine so I need to make sure its nice and clean! Don't want them thinking i'm a scruff! Don't know where i'm going to put everyones drinks though, the fridge is abit full from when I went shopping yesterday...........!

feeling useless

Well yesterday I did naff all, I sat around feeling sorry for myself and did quite alot of sleeping. I didnt sleep too well as I had a horrible headache and I even when I sleep, its almost like i'm not sleeping properly, I dont feel like i've slept. I feel like i'm not fully here most of the time and I can't concentrate on things and organise myself, time just went yesterday and I don't even know what I did

In the evening Petes parents took us out for a meal which was nice and I had some wine which woke me up abit.... Pete asked if was drunk on the way home (which I was not) because I was 'chatty' and this made me miserable again. I always interpret things he says to mean something else, see I interpreted this as meaning i'm not usually chatty because i'm boring because I sit around doing nothing. Earlier he said to me about something (cant remember what!) that 'it would give me something to do' and I had a go at him saying just because I dont work I don't need him finding things for me to do.

Anyway last night I ended up crying when we got home and just had a moan about my cf, I mean thats allowed once in a while isn't it? I explained I felt useless, that I was an intelligent person and had the potential to do great things with my career (seriously I think I could have been a great lawyer!) but because of my stupid cf I couldn't, I couldn't even handle doing a job that wasn't that demanding. I just moaned about everything, down to the fact all my bras are now too tight for me because my chest has gotten so much wider from I dunno, coughing and stuff, and they all now dig into me. I feel useless because we are skint because I have no wage now and don't even qualify for benefits for 6 months. When we were having tea Petes parents asked me what was happening job wise, I explained I had felt better since giving up work and didn't plan to go back. They said 'well we would all feel better if we didn't work', in a jokey way and i'm sure they were just joking around and didn't mean anything by it but I dont feel like people understand how I feel about giving up work, about giving up having a possible career. It is not something I want to do but I know its for the best. I just feel like I have no purpose at the moment, i've always had a goal to work towards and now I feel like there is just... nothing. Im so ungrateful because there are people with cf worse off than me but I cant help how negative i'm feeling at the moment. I feel like i'm getting left behind, my friends are all doing great stuff, Pete has a great job and i'm just doing nothing......!

So anyway today I bought a load of new bras, I got 36's. So I wont have that problem anymore, I also walked the dogs around town as I needed to pay a cheque in and post a letter. I also went food shopping which I find extremely hard work as we live on the bottom floor and you have to walk down stairs to get to our flat so back up them to get the next lot of bags and its hard work....! Ive got a new book to read called the constant princess, its about Catherine of Aragon (yes my Tudors obsession continues), its by the woman who wrote the other Boleyn girl and that was a really good book. I got this book off ebay for £1.20, bargain! So going to read that now, then kill myself later ... No i'm just kidding :o)

feeling abit down

Ive been feeling abit down these past few days, I dont think the weather has helped as it has just rained and rained some more, and so I haven't done anything. So i've been moping around and thinking far too much, I realised on friday I hadn't really seen or spoken to anyone all week apart from Pete. I don't want to start isolating myself, it's so difficult to organise to do things when a) i'm tired all the time b) I have no money because I dont work anymore, so I end up staying in talking to the dogs, going crazy.

I have also been thinking bout having children, I always assumed I would be able to. But I was reading that cf booklet the hospital gave me and it says they recommend your lung function is above 60%, well mine is 41%..... So now im thinking I wont be able to have children and if I do my health will get even worse and I will die. I know thats very dramatic but thats what happens eventually if your health keeps going downhill! Surprisingly I dont really want to die, i've always accepted I will die before the average person but even when you accept that, it doesn't mean you dont mind dying in your 20's or 30's. People don't like talking to me about me dying, they say im different etc. erm no i'm not, i'm not invincible. So now I dont even know if i'm going to be able to have a baby, I mean i'm not planning to get get pregnant tomorrow but it was always something I planned to do. The idea of not has really upset me because it's like the most important thing a woman can do in my eyes, so I would feel like a failure. And its so annoying when there are people just popping kids out all the time that they don't really want, they don't realise how lucky they are that they can just do that!

Alongside all these 'great' thoughts i've been having, my chest has been feeling rubbish. I keep getting pains in my chest and my chest feels like its too big for my body so I cant breathe properly. Im getting out of breath easily and coughing all the time, i'm also coughing up little really hard, kind of rubbery bits of sputum (nice ey?). Also my body is achy but i'm not sure if this is from falling down the hole the other day, i've got a lovely black bruise on my leg from that by the way, its about the size of my hand!

I went to see The Duchess last night at the cinema, which is a great film by the way and I was coughing in the queue for the tickets, the queue for the popcorn (yum!) and eventually went to the toilet and coughed loads of stuff up in there, luckily the toilets were empty. I eventually stopped coughing, its so embarrassing, people were looking at me and im sure a woman moved away from me. If I hadn't have stopped coughing I dont think I would have been able to stay, I cant stand it! Ive got one of those cea cards now, so I paid for my cinema ticket and Pete got his for free as my carer, so that was good!

On a positive note, I saw a dress I liked for my bridesmaids on the internet. So grabbed my friend and we went for her to try it on, it was lovely. So I have bought it and going to order the others. I know its abit early but I really liked it and they won't sell it forever, I dont like many bridesmaid dresses so to find one I like is a miracle and I had to get it! It was nice to get out of the flat and see my friend too!

bad start to the day

Im feeling abit sorry for myself at the moment. Murphy is currently living with us whilst my parents are on holiday and this morning they both managed to escape into the next door neighbours garden, I dont know how they have managed it as I have make that fence like a fortress. So I was walking over in my pjs to get them over a grate thing, and it slipped and I fell down the hole. Yes haha it sounds very funny but I was covered in mud and all my leg is scratched and aching, I started crying because it hurt and because of the shock of falling down a hole, but the trouble is with crying is its no good if there is noone around, and dogs dont understand crying. I couldn't open the bloody gate so had to lean over the fence and try temp them to the fence with treats and grab them. Murphy was easy to catch but Alfie was abit smarter and saw what I was trying to do. Anyway in the end I had to grab his collar and pull him to the fence, he let out a loud scream so now I think I may have broken his neck. He seems ok but is mad at me and sulking.
So now we are all sat watching ER and my leg is killing, im annoyed, not a good start to the day!

I've joined the gym, but they have to wait until a doctor has seen my evidence or something like that. So I don't know how long that is going to take, I wish they'd hurry up so I could get started!

My appetitie is abit poor at the moment, I hardly ate any tea last night (cos it was horrible) and i've not been having lunch, although I did yesterday because Pete took me out for lunch. Anyway Pete went and got me some hagen daz icecream last night, so dont think ill be losing any weight in a hurry.

I might take the dogs for a walk later, although when I took them on tuesday it didn't go well. Alfie kept trying to hump Murphy all the time and their leads got all tangled up when they were barking at another dog and I dropped Alfies lead. So I looked abit stupid running after him... coughing, infront of people. So we will see how today goes.....

Looking sexy in my gloves

Well now that I have caught up with The Tudors series, I am abit lost as to what to do! Therefore I decided I could not put off cleaning the flat any longer, the scum in the bathroom had to go. So I got my new gloves out and set to work. I vacuumed every room, mopped, put the bedding in the wash then hung it outside and cleaned both bathrooms. Heres a picture to prove it, (BEWARE, this is not a picture of the Gemma you are used to, I have no make up on, messy hair, glasses on and I am still in my pjs, argh the picture might turn you into stone!!)

It took its toll though, haven't really done much else, just sat on my arse watching tv and looking on the internet at all the English monarchs that have ever existed, i'm totally serious..... im such a geek. I was going to have a kip, but couldn't be bothered, if that makes sense! haha! I might have one in a minute, Alfie is having one and its appealing to me.

Pete and I think we have found the venue for our wedding reception. Yeay! Its an old house and all the rooms are different, the bridal room is really old and has secret doors in it! The room for the reception is nice and big with chandeliers, oh fancy. Plus they only hold one wedding a day which is great, no chance of running into another bride, which would kind of ruin the day! We have a few more to look at but we really like this one.

I called the gym a minute ago which I am planning on joining, I wanted to arrange a look around before I start handing over my money. The guy asked me what days I could come and I told him then he went quiet so I assumed he was looking on a computer or looking for someone. So I sat there patiently, one minute passed, then two minutes, then three minutes and I was beginning to wonder if he had forgotten about me. Then I heard him cough on the other end of the phone, so I waited another minute and then said 'are you still there?', he said yes he was and then carried on with booking the appointment. Now im confused, did he think i was doing something and waiting for me? Or did he go to sleep for 5 minutes? Anyway, it has not put great faith in me as to what to expect tomorrow when I go look around! I think going to the gym may help my lung function as well as get rid of my fat arse :o) , it has a swimming pool which is what im mainly interested in. I can get a discounted rate as I cannot use all the equipment such as saunas as they have lots of bacteria in them (or so I have been informed and told to avoid), I could use a running machine but for about 1 minute! I definitely won't be able to use anything when i'm on my iv's, plus its recommended by the physios that I do exercise to improve my health.