Tuesday, 4 August 2009

Hen Night No.2

Here's a slide show from my Hen Night in Newcastle, had a great time! By the way I am not in the habit of letting strangers try to lick my face (I didn't realise he was there!) or walking around with my bra showing. I hope my dad doesn't have a heart attack watching this!

Friday, 31 July 2009

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

Monday, 27 July 2009

Video of IVs

Me doing my IVs, the eclipse (bubble thing) is the colomycin, the one in the 50ml syringe is meropenum. Yes I know its a boring video but some might find it interesting!

Friday, 24 July 2009

Port is Looking Good!

I had my half way visit today which meant port needle change. This meant I could have a good look at my port. You will never believe it but it looks bloomin marvelous! There was one tiny lump and abit of redness from pulling the dressing off, but there was no weeping, yes no weeping or ugly lumps or anything! Wahoo! So fingers crossed it has done the trick and my arm will lovely next week when I finish my IVs. I'm so glad it seems to have worked, I really was at my wits end!

I told the nurse the pain in my side is not shifting, she said if it gets more painful or constant then to let them know and they will xray it. I also told her how rubbish I was feeling and I'd just basically been asleep for a week. There is not much she can do though, I need the drugs to feel better in the long run and since I am allergic to quite a few I have limited choices. My sats were 95% again which seems abit low but the nurse didn't seem concerned so neither am I!

Ive not done anything this week apart from scrounge food off my parents and travel to Liverpool with my brother as he needs his passport for Petes stag do and didn't send it off in time because he is an idiot! So he somehow persuaded me to travel to Liverpool with him on the day I most unfortunately woke with a terrible headache that did not budge all day. I was wearing sunglasses when it was raining because the light was hurting my head, I looked so cool though :o)

People keep asking me if I want to do stuff with them because they are off work sick, there are two things wrong with this. First if you are ill shouldn't you be at home resting and second, should I, Gemma who has cf and is currently on IVs be spending time with ill people? I think not. I haven't felt well enough to do anything anyway. I thought the side effects of my IVs would wear off but a week later and I still feel rubbish!

So thats all I have to say for now, so bye!

Sunday, 19 July 2009

Side Effects of IVs Are Not Good!

Hello!

So the hospital had 2/3 of the dressings I needed. Luckily I had some of the other one as Pete has been using it on his toe where he had the nail removed and had a few spare, bonus! Makes a change Pete having some medical supply I require and not the other way around. If you ever live with someone with CF you will soon learn that they are like a chemist and have supplies of nearly every type of medication you could require.
So we shall see how these dressings go, I have kalostat on, then melolin and then hypafix. I now have my own supply of all the dressings for in the future. Its itching abit, but could this be my mind playing tricks on me....?!
The IVs are making me feel like shite. I'm on colomycin and meropenem and I think they hate me. I have no energy to move not even to eat, I'm cold then I'm warm (I don't have a temp), I ache, my head feels all funny and my face is tingly and feels like it is going to fall off, I imagine my face feels how it feels after having intensive botox. Anyway enough of me moaning, here are some pictures instead


My messy IVs corner (above)
Wedding Pete and I went to last night but had to leave early because I wasn't feeling too clever (below) and I obviously needed to shoot up at some point
My big puffy hair that seemed to evolve on top of my head today

Wednesday, 15 July 2009

Naughty Lungs for Sale, Free to a Good Home!

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

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

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

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

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

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

Monday, 13 July 2009

Hen Night No.1

So my first Hen Night is over and done with!

I had a really good time, we went to London on Saturday to see Dirty Dancing and then did abit of sight seeing on the Sunday. So glad I borrowed my brothers case with wheels and a handle as I was planning to take a normal bag, don't think I would have coped very well!
We were abit rushed when we got there as the show started at 7.30 and we needed to get something to eat. I had 40 minutes to do my physio and neb and get ready! In the end it took me about 50 minutes maybe slightly longer but I still did pretty well.
The show was good but not as good as I had hoped, however I still enjoyed it. The room was so warm so I couldn't cool down as I got really warm walking to the theatre! I was not looking forward walking back as it was uphill and raining, luckily my Nana suggested we get a ride in one of those carriages where they pull you on the bike so that was fun, I don't know how they do it!
We had some drinks in a pub across the road from the hotel, my cousin and I were the last ones to go to bed and I admit I was rather drunk...
The next day I felt petty awful when I woke up but I soon felt better when I'd done my physio, had a shower etc.
We had lunch in Covent Garden and had a look around the market, then went for a coffee and some cake in Piccadilly Square. We then had a quick walk around to Trafalgar Square to see the plinth, a guy was on there setting up some plants and a deck chair.
I was so tired when I got home I just slept! I didn't do my evening physio, so naughty!
Some bucks fizz on the train

My nana is a midget haha

Luckily I got away with a flashing necklace and L plate on this Hen Night, I think on my next one I might not get away so lightly!


Thursday, 9 July 2009

Happy Birthday Pete!

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

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

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

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

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

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

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

Monday, 6 July 2009

Presentation

My presentation went really well, yeay!
I was scared I would get nervous and forget what I was going to stay but this didn't happen, once I got going I think it was rather hard to shut me up! The thing lasted for 3 hours!! (with a 10 minute break). Never knew I had that much to say! I hope people didn't get bored, I took some stuff like my acapella, I-neb etc to show them how it works. Then I just spoke through everything with the slideshow to prompt me.
People said it was good and said it had taught them alot, they also said I was good at presenting it. Hope they were been honest and not just trying to make me feel better!
I'm glad I did it now and can't believe how confident I was. Must be because it was on something I know quite alot about! lol.
Here is the slideshow, you might have to pause it if you want to read all of it. I based it around me which I explained to them, so if information doesn't apply to you then you don't need to point it out to me thanks! I am aware everyone with CF is different and emphasised this in my presentation.
Thanks to everyone who helped me out and provided me with the information and pictures, I couldn't have done it without you! Please don't tell me if I got any facts wrong..... lol, it's too late now!
The people on the slideshow are the ones I included in the presentation, I picked people who showed variation the most. If you are not on here but gave me information on yourself, don't worry, you were on the handout! If you want to see your slide let me know and I'll email it to you! If you want me to remove you off this slideshow let me know asap and I will do. Sorry no funky music with this one... :o)
Thanks!! xx



Edit - Sorry just watched this and it's not very good as so small but don't know how else to let everyone see it! Get your glasses out!

Youtube link is abit better - http://www.facebook.com/ext/share.php?sid=125520211354&h=29GIE&u=2x4ME&ref=mf

Friday, 3 July 2009

Evilness of the Chest

Lidl is ace!
I just went to get a few bits and bobs and it only came to £5 and a few pence.
I got:
Some garlic and coriander nan breads
Tikka Massalla Sauce
Onion Bahjis and Samosas (guess what we are having for tea tonight...?)
Kingsmill bread
Pitta breads
Spready cheese
chicken with herbs (for in sandwiches)

Not bad ey?!

My chest is been an arse this week and that's me been nice. I keep getting pains, then my lung felt like it had unstuck its self from my rib when I was driving Wednesday morning, it was not pleasant and it hurt. When I lay in bed it feels like there is a weight on my chest and then today I have been finding it harder to breathe. I'm not gasping for breath or anything but I am aware of my breathing which is always a sign I am struggling abit and feel like I've just done something to make me catch me breath when infact I am sat doing nothing atall. I have even had to put my acapella on a lower resistance as I can't seem to blow into it hard enough, I've lost my puff!! Nooo!!

So anyway I have done some salbutamol through my I-neb, I kind of guessed how much I needed. I estimated half of the neb as that's how much you use for dnase and tobi and its how much salbutamol I used to use when I mixed it with promixin. I did it though my chamber I use for dnase. Anyway now I feel all shaky as it tends to do that, and my chest feels no different. So load of good that was!

It could be the weather, or maybe my chest is recovering from all the walking when we were in London plus I did get very warm. I am also blaming myself because I didn't do my physio or nebs on Monday night as we didn't get home until half 10 and I was way too tired and just went to bed. But surely missing one lot isn't going to make a massive difference?!

I am also coughing up sticky sputum, the kind that hangs from your mouth as half of it is still stuck in your throat. Yes it is lovely.... and I seem to be spending alot of time over the kitchen sink! I'm not calling my cf team, I shall see how it goes over the weekend. I have a feeling this will pass so not going to kick up a fuss, I'm sure I shall live!

Anyway putting all this aside I decided to go swimming this morning since I have not been in awhile, I have been abit naughty with my exercise regime the past few weeks. The first few laps I usually struggle then I'm ok, today it took about 15 laps before I stopped coughing my guts up, I was seriously ready to give in. At least people kept out of my way in the pool which can only be a good thing! I managed 24 laps in the end which wasn't bad.

I've not really done much this week, just been sat in the front room appreciating the rays! I did go cruising with my roof down to JTF which is this wholesalers. I bought some photo frames as I am putting some photos up of Henry and his wives (that I got on my trip) above Alfie's basket, Alfie is a big fan too.....!! hehe. I bought a few other bits and bobs, its one of those places you go and buy stuff you didn't even realise you needed. For example I bought some marshmallows, who knew I would need some of those? I have been doing quite alot of napping too, I blame the heat! Not that I'm moaning about it, I love the sun. Its cheers everyone up! Don't be thinking I'm lazy though, I did a load of cleaning yesterday!

Here's a picture of my mini in her element i.e. with the roof down. Isn't she pretty? :o)

I doing my presentation on Monday about CF, wish me luck! I'm very nervous!