Great South Run

Just a short sweet message to say a very good luck to one of my friends that are running for Cystic Fibrosis today! She will be running along with my sister and my name written on her back! She has raised about £250 with a promise of more from her family once she has completed :)
http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=KatieThomas4CysticFibrosisTrust


xXx

Iv time, hassles and bonuses.

So I started Iv's Monday, first time ever being day cased, literally had a blood test had the first doses of my Iv's (Fostfamycin and Tobramycin) and was sent on my way! It all seemed very organised. My hands had started tingling after my meds but I get this tingling sensation in my hands quite often and randomly when I'm not on Iv's and it usually stays for an hour and goes. I keep meaning to see a Doc about it but then forget till it happens again! This time I happened for 8 hours and I was starting to pannic.... was it a reaction as I am allergic to a lot of Iv's? Had something happened to the nerves in my hand? Was it going to stop?!! When we got home Mum did some research on the internet and it came up as a common side effect of high blood sugars, which I am borderline and I'd eaten a lot of chocolate that day and they had started putting my meds in Glucose instead of water for the first time ever....so maybe? So I told them I wanted my meds in water from now on and I have been fine so far so fingers crossed!

Anyone who reads my blogs will know I have a real phobia of needles and I can't deal with blood tests. Monday my port bled back fine so no concerns..it has been bleeding back all year so I had no concerns but then yesterday it decided to just stop! I was so angry/ upset and ready to just give up the Iv's. My nurse then tried a blood test, knowing how phobic I was and she missed my vein and then was wiggling it about trying to get it in a vein which was horrid!! So then I didn't want her to have another go so had to wait for an F1 blood testing doctor who was amazing and had a good old feel and got it in one! Thank goodness because I was so worked up I felt like I was going to be sick! So that was that over but should Imagine I will be going through it all again for blood tests next week!

Next moan, the home care delivery company! Guess what time they delivered my fridge meds that we had been waiting all day for 00:30! and they rang the house phone when they were near and banged on the door loud enough to wake my 2 little sisters up! Really quite ridiculous!

Anyway now I think we're sorted and should have a good few weeks. Marc and my grandparents are over tonight as we are doing a family come dine with me! My littlest sister is starting tonight and she is making leek and potato soup, pizza and salad and harribo cupcakes! so should be good! I also have lots more planned for the 2 weeks, start some diploma work, help Mum sort and tidy there house up, get some mega good physio's done, paint my nails, sort out my wardrobes, take some nice pictures of the family..(ready for Mums xmas present shhh..) watch some DvD's and see my friends that I haven't seen for ages and oooh hopefully my iphone 4s will arrive, never had an amazing phone so super excited!

Last thing to report was there was a small tornado in our area yesterday evening, I didn't see it but lots of people have put some awesome pictures on facebook and it made the news so bit of excitement for Sussex.

Hope everyone is well! M x

Another Step Forward...

So recently I was complaining that Marc and I seemed to be taking one step forward and two back, well that continued yesterday where I felt we took a massive fall backwards, for Marc's medical tests for this job, he found out he needs even more tests, which seems to be becoming relentless and he feels like he is slowly losing grip of this dream of his! My Mum has had to reluctantly try and sell her horse due to lack of funds and no-one about to look after my little sister since my Dad moved out. Well this was going well untill the vet check on the last hurdle just before a woman was going to commit to buy, announced he was 5/5 lame, which is an incorrect judgement so Mum is getting a second opinion but the lady has pulled out and doesn't care for the second opinion! gutting as she was so sure this lady was going to buy and was kind of relying on the money coming in as she is rather broke, and I had spent the whole night before last up coughing, so out of the possible 5 hours sleep I could have had, between My late and early at work, I probably had an hour of actual sleep so felt exhausted and emotional and everyone else's stress and problems were just as much my own as why is nothing going right for the people I love and deserve it the most. Then my Granddad phoned just for a chat and ended up telling me one of his close friends had had 2 heart attacks in the week, recovering from the first but being left presumably brain dead from the second, with very little hope of recovery, which put all of our other worries into prespective and made us all feel even more down and with that I snuggled up to Marc at 8pm with a DVD (toystory) and our duvet and was fast asleep by half past!

Today has been possibly a more positive day:D Marc has found out if he does need these tests he can get them in the next week (will have to pay but will be worth it) and then hopefully that will bring a positive conclusion that he is fine! Mums seen a few experienced horse people today and they have all said there is no way Freckles is lame so she is more hopeful that the next person to come along will actually have enough experience to see he is no way lame. And the third positive contributing to my step forward and something I shouldn't really say as it might jinx it but what the hell, I'm excited! There is a slight chance I'm up for promotion next year, found out you have to be 21 and my manager was hinting that they will be needing someone immediately after my 21st and they will be asking our team first then she kept hinting for me to make sure I attend certain meetings in the next year so keep your fingers crossed for me!

Lets just hope tomorrow continues with the steps forward and we have no more steps back!

CF at work, Marcs dream job and my Sister and her CF

I wanted to come and just write a really positive message about my job. I work in a children's care home with Children and young adults with learning disabilities as I think I have probably mentioned before. Anyway, I work a set 40 hours a week, which I just manage with and it is most of the time great! We took some of them on holiday last week, which meant I got to go as one of the staff:D We went to centreparcs, On Holidays the shifts are done different and most the staff work 7am - 10 pm everyday, or they swap about so one day of the week they do a shorter shift. Luckily they organised for me to have the only double room available, the only one with a TV and I did a 9am - 8pm shift everyday, so I had 2 hours in the morning and 2 at night where I could go and sit on my bed and do my physio and my nebulisers whilst watching some TV. It was really good. And I stayed well! Then they would come off shift at 10 pm and we would sit and watch TV together for a bit, which I could relax knowing I'd done everything then off to bed at about 11 ready to get up at 7 again the next day! So I just wanted to share how well they had worked around my CF. All the staff were interested in what I had to do, but not to a nosey point, they would just ask a little more each day. Now I feel totally comfortable around all of them which is really nice for our work environment. I am back home and to my normal hours now, which is great as I missed Marc like mad, and just being at home.

Marc is still in the middle of the different medical tests he needs to pass to get this dream job of his, the last few months we seem to have taken a giant leap forward and then rolled back but now we seem to be slowly moving forwards so If people could still keep there fingers crossed for him that would be great then I can talk about it without worrying I'm going to jinx it!

I've got a hospital appointment Thursday, bit annoying as I can't lay in on either of my days off now as Fri I have a jab in the morning, but o well, these things have to be done. Then I'm in for planned Iv's on 24th Oct:( I planned them because I have to work over xmas and I do not want to get ill, plus it's been a whole year since i had any Iv's which I have been lucky but I seem to not last after the orals at the moment so need a boost! I hate Iv's I seem to become an emotional wreck, my needle pops out my port pretty much everyday though I'm trying some new needles this time so fingers crossed... Plus I don't want to stay in at all because it is so far away from home and I become a nervous wreck, I just don't trust nurses, except my actual CF ones which is really bad, but have had some experiences!! so I'm going to ask If I can just sort it from being a day patient, probably not but worth a shot!

My Little 9 year old sister had to go to hospital yesterday, she also has CF but seems to suffer a lot more with the stomach side and she had another blockage which was causing her to sick up some pretty nasty stuff, they gave her 3 movicols to drink and upped her lactulose stuff which I think has done the job, thank goodness as she has had 2 serious blockages since she was born bless her, I hate seeing her ill, luckily her lungs seem to be a lot better than mine ever were, how strange how differently CF can affect each person and it also shows how much more advanced they are with treating the younger generation. I'd love to post a picture of her here from a show I watched her in the day before she went to the hospital with the blockage as she did so well and looked absolutely beautiful and smiley even though she had really bad tummy pains the whole way through! But I don't know how too...so with that I will say good bye and if you are still reading sorry if I have bored you beyond belief but thanks for sticking with it!

Lungs are calling for IV's!

I felt absolutely fine 3 days ago, then my line manager got a chest infection, I thought through my supervision she was coughing a bit so sat as far away as possible, then an hour later when I tried to phone through to where she was I was told she'd gone to the doctors as she thinks she has a chest infection...great. So no surprise last 2 nights I haven't stopped coughing and last night I woke with some random pains in my lungs I haven't really felt before and my stomach was really hurting in a different from usual way too, managed to sleep in till 10am this morning so feel a bit better and luckily I have my 2 days off now so it's into lounge clothes and DVD's with Marc for 2 days then we're out bowling tomorrow evening for a friends birthday, and I am looking after the sister's so they are coming then staying over too. Started myself on antibiotics last night so can't wait for them to kick in and I am going on IV's last week of Oct if all goes to plan. Hope my needles stay in my port this time (unlikely) but I've had it completely checked out via a lineogram and there is no reasons for it to not be staying in.

Luckily Marc's got these 2 days off too and he needs to relax as he is going on a 24 hour blood pressure monitor just as part of a medical for his job so we can both completely chill out and I can be on the mend and he can keep his BP down.

Busy Long weekend

On Wednesday I worked a 13 hour shift and this meant I got given Sunday Off, I'd already worked last week on my day off so had been granted this Saturday off and already had my normal Thursday, Friday off. Making this a very lovely long weekend off!

Thursday I went out for lunch with Dad, this was lovely, hadn't seen him for ages because I didn't want to meet his new girlfriend and he has broken his collar bone so can't drive. I picked him up and we went to a local brewers Fayre. I got chicken, bacon, cheese and barbecue sauce with chips, salad, garlic bread and coleslaw. On top of this we ordered onion rings! We got 20 each and both eat them all! Felt ill after, but still, it was quite an achievement!

Friday I went out for breakfast with Marc and his best friend. It was buffet for the hash browns, beans, tomatoes, egg, mushroom.... so eat lots of that but I was still hurting from how much I ate the day before so I eat half a ration of bacon and couldn't even touch the sausage. We didn't need lunch then went to my Mums to surprise my sister for her 9th Birthday, We'd bought her a bike and wanted to hide it in the lounge before she got home from school. She was very surprised (especially as it was a day early) and took it out to show all her friends that were still at the park next to school. We then went out for buffet Chinese, which is amazing and I stuffed my face again (For the last time in a while as I really won't fit in my wedding dress next year!). We then went to some amusements, won two voodoo doll key rings on the 2p machines and won a teddy on the claw machine which had a £5 attached to it, win!

Yesterday went to the boot sale, not very much there as it was the last one and wasn't sure the weather would hold. However got 2 DVD's for myself and 1 for someone at work! Marc got a griddle frying pan that he has been wanting and his sister got some maternity clothes and baby toys...I get so broody it's unreal! We then had lunch together and went for a walk with Marc's sister and sister in-law and nephew who is also gorgeous and makes me broody, they took there dog's too who are soo excitable. I was feeling really exhausted, legs hurt and lungs ached but I pushed myself to keep up and no-one ever see's me struggle, except Marc but that's because I moan and moan and moan to him ha-ha... Marc and I then cooked a nice healthy dinner together of smoked haddock, mash, broccoli, cauliflower and leeks. So we're now in to our healthy eating plan which started yesterday and I have planned meals for at least a month...this is to help with his medicals and my fitting in to my wedding dress next year.

Today Marc and I have been watching remembrance documentaries for 9/11, the new ground zero re-build looks amazing and the effort put in is astonishing. The stories of all the lost loved ones is so hard to watch but everyone should to get a real feel for those people and what went on that day. 10 years on, R.I.P to all those lost. Later on I'm going to a fate that both my Mum and Dad organise (awkward) to raise money for the bonfire society that they are both members (awkward again). Annoying thing is is we keep having really heavy showers so don't know if it will get very busy! And we have to park in a field so I'm sure I will get stuck if it gets too boggy but I'm going to go and I'll spend a £10 to help them out and you never know if I have the same luck I had at the amusements I could win something!

Hope everyone else has had a nice weekend!

Where to start....

Well I think the best place to start is by writing about how I bought my wedding dress last week! It is beautiful, can't go in to too much detail in case my husband to be stumbles across my Blog, I must say though my CF shaped figure was rather inconvenient. A size 12 dress was too small for me in one style yet the style I ended up wanting she said the size 8 was too small on my hips and bum but fitted perfectly round the rest of me, we ended up getting a size 6 (which I never am and never will be that size) but it fitted my bum and hips perfectly and she showed me how to do it up at the top which also made it fit perfect everywhere else. O how I love my tiny bum and legs but huge pregnant like stomach (which I am not , pregnant, just to clarify). Luckily the woman was very helpful and showed me how to hide all the unwanted bits haha. Wow can't believe it is coming round so quick and I am getting married next year! It is so exciting, we seem to be very well organised at the moment, that's what people keep saying anyway, they just don't know that we have put deposit's on everything and are hoping we will somehow be able to pay for it all ha!! I know we can do it and it's going to be the best day ever.

I also went to Madame Tussauds Sunday, that was pretty fun, definitely trying to plan a whole day trip to London now, especially as I have a merlin pass and a pass so I can take a carer and my sister's and Mum have them, so cheap days out. we have already got our moneys worth since we bought them in April we have done Chessington twice, Thorpe park once, three days in Alton Towers and now the Madame Tussauds. Mum got them on her clubcard points from Tesco's so well worth it.

My partner is in the mid of trying to get a new job, another thing I can't write too much about as he is so close and I really don't want to jinx it for him. Just be keeping your finger's crossed! So that's another really exciting thing.

I am in the mid of writing up a month's healthy eating plan for the both of us, I can't afford to put on any more weight, I do usually stay the same so it's good but I would like to eat a little healthier as sometimes we both just end up binging on chocolate! and prawn crackers is our latest thing, a huge bag as an evening snack lol. My partner has medicals coming up for this possible job so he wants to get super healthy, he is physically really fit and runs alot, goes cycling, rowing machine at his present work a lot so he wants to keep that up but just eat a tiny bit healthier e.g bring more fish into our eating and lots of different vegetables. We do eat well anyway, our portions could just do with a little down sizing really. So will keep you updated on how everything goes.

Other than this I am busy working 40 + hours a week. I have my little sister's Birthday coming up and can't wait to give her the bike we have bought her, then we are going to cosmos for dinner:) the healthy eating starts the day after of course! Me and my partner amaze everyone on how much we eat at cosmos, it's the best ever! especially as Chinese is by far our favourite take away and cosmos is all you can eat!!

Sorry when I write it's just all over the place, random thought's and doings from the week but that's how my mind works, constantly thinking and randomly remembering things, I live off too do lists otherwise I'd forget to do everything and anything, I blame CF for this too as we have a lot more to remember than a lot of people like all the meds that keep us going!

Take care all, especially as I think we can all feel the dreaded Autumn/ winter coming, well before it's due date! (did it even ever leave?)