Thursday, 23 August 2012

Update in the life of me!

IV's - So I started IV's just over a week ago, I wasn't that ill as I'd just had some orals, but their worried I am using orals too often which I agree with and they would like me to try and have IV's 6 monthly as they should keep me well for a longer period then just have orals in between to see me through! Its also a pre-holiday boost which I always make sure I have, I want to be the best I can be for a holiday, especially this one as its my belated honeymoon! And its this date next month, coming round so fast! I also, as I mentioned previously hope to start trying for children once we're back if our results for Marc come back okay and I'm hoping they'll see me through this too! 
Lung Function - I've just put my Lung Functions down the right of this page, I thought I had my older ones written down somewhere but I can't find them, so I'm going to log them on here now! The antibiotics put it up from 58% to 65% which was great, but my best this year has been 71% and I really want to aim for that! Mid IV's it's gone to 67% so we are creeping up and I am really pleased! Trouble is is I find it really hard to do exercise with my port accessed, so where I'd usually be doing lots and mainly swimming which I can't do, I'm not doing half as much and I've been so busy this time with various other things! So I really need to step the exercise up if I want to see it go any higher by my end of IV Lung Function! I have realised that over the last year I have only been to the hospital or had a lung function when I feel pants which is why it doesn't look so good and the best I had of 71% was more than likely the last time I had Iv's all the rest have been quite a lot lower 55%-65% so I'm making sure from now on I arrange to see a nurse monthly, then I'll be getting my port flushed the correct amount of times and getting a lung function done monthly which will better show how my health really is! Once I'm pregnant if all things go well they want to see me at Kings once a month anyway and they say I will have to stay in lots, when it comes to having a baby, I'll do what I have to do and always think of the benefits on them to get me through!
New family member - My sister in law had her baby at last, 8 days over due! On Saturday, he weighed a whopping 8lb, 15oz and she only used gas and air and didn't even need stitches! It was her second, he first weighed 7lb 4oz and she had a horrendous labour and delivery! He's absolutely gorgeous and I have had a cuddle everyday since he's been born! I looked after my other nephew while they went in to have him, he is 2 and a half and the most well behaved kiddie ever! Think me, my Mum, my sisters, my nan and my Granddad may have warn him out though, he went swimming, played golf, went on the trampoline, went to the park, played football, had stories and the list goes on! and he still managed to get plenty of sleep in, 12 hours within the 40 we had him!
Open Uni Degree - I am starting an open Uni degree! I've debated over it for a while and this year I am working less hour so decided to go for it! All the books and files arrived yesterday! So excited, I've already started reading and trying to do bits!
Visiting Hubbies parents/ Alton Towers - Once I have finished my IV's My hubby and I are going to Gloucester to stay with his parents for two days then we're going to meet my Mum, Sisters and hopefully Mums new man at a Alton camp site for three days! We are going to do two days of Alton Towers and one of something free around Alton, probably a walk. 
Back to work - How quick have these Summer holidays gone? Once I've done the above it will be back to work! I need it so I can start on my essays though! And I'll only be back 20 odd days then I'm off on holiday which I feel I desperately need!

Right I need to go get some breakfast! It takes me ages to write so now I'm starving!

Tuesday, 31 July 2012

Genetic Counselling

          So I sort of explained in my last post, that my Blog is going to be extremely orientated on Marc's and mine journey into the world of living with Cystic Fibrosis and trying to start a family; I will discus the complications, decisions and emotions we may/will have to face and explain the steps we have to take to make sure we are giving our future baby the best possible start in life and future for us as a family.

          Marc had his genetics appointment yesterday, yay, it's felt like a long time coming and I just want the results as they are something that are completely out of our hands as well it's either in his genes from birth or it's not. They have told us results should be about 4 weeks which is quicker than most have told me. I wont get my hopes up but by them saying that means in 4 weeks I can get Marc to phone them and nag to try and hurry the process up, then we should have them definitely for when we get home from Mexico in 8 weeks time! Fingers crossed for a good result. The appointment went pretty much as expected; bit of discussion over the chances of being a carrier 1 in 23-25, then the chances of us then having a baby with Cystic Fibrosis if he is a carrier 1 in 2 (50%). It is usually if their are two carriers a 1 in 4 chance of the baby having Cystic Fibrosis but because I carry the 2 genes making me have CF it makes the chance greater. She asked if we knew what we wanted to do if the results meant Marc was a carrier and we explained we would want to go through IVF which she said she would refer us to the IVF centre if we still wanted when we get the results. She then explained that it only tests for the 28 most common genes and that is 90% of the Caucasian  population with Cystic fibrosis but their is still a very slight chance, what would we like to do about that? We thought about it a bit and discussed it after and if he passes the common test and shows up as not being a carrier we will try for a baby naturally. She also asked if I was aware that some Cystic Fibrosis women do have fertility problems and had we thought about that, Marc and I said we were aware, but planned on not worrying about it until we have been trying for a while unsuccessfully. It does worry me, but worrying about it before we have even started will make us worry more which can affect being able to conceive even more. I have heard cervical mucus can also be a problem iand some ladies have advised me what can make that thinner and I have added that to my shopping list to get us off to the best possible start. I also plan on starting a healthy diet, cutting out so much caffeine and starting folic acid and anything else anyone can suggest!

          My last post explained how my clinic appointment at my Hospital the other day went, I thought i'd quickly share the key points again... They pretty much gave us the go ahead, just want to boost my lung function to the best it can be, make sure we keep an eye on my sugar levels (I am borderline diabetes) and will arrange for us to discus with the pharmacist all the medication I am currently on that I will have to stop taking. For people that don't know Cystic Fibrosis has a major impact on our lung function, this can be from amounts of mucus on our lungs during an infection or from scarring on the lungs, the worry of having a low lung function during pregnancy is that you loose more lung function during in pregnancy anyway because the baby resting on certain places and if your lung function is already low this could take it 'dangerously' low, making a negative impact on your health and your future babies health. I believe most CF teams hope for their patients to have a lung function of 50-60% and above before starting trying. My lung function is 58% currently but I have just started antibiotics due to chesty cough and am well over due some IV's. The best lung function I have had this year is 71% so that is my aim after this course of antibiotics and IV's and I hope I can maintain it. I start IV's on the 14th August for a 2 week course at home, where I plan on continuing to be compliant with my medication but with even better physio's and even more exercise. We are planning on starting to try for a baby the day we get back from our honeymoon in October so this gives us this time to get my lung function up but also means I need to make sure I can keep well until then after the IV's so we are at our best health ready. I have been monitoring my sugar levels this week and they are a bit high after meals so I am getting slightly worried, I am booked to have another glucose test in October after my honeymoon, this will happen whether I'm pregnant or not as they want to try and make sure before I get pregnant, but even if I am pregnant they like to keep a very close eye during pregnancy and I'm pretty sure they said they will link me up with the diabetic team anyway. They didn't say much about what drugs I can have during preganancy- antibiotic and IV wise, I don't think they really know as they did mention I may have to be de-sensitised but they would rather I discus it with the pharmacist, I should imagine this will happen when I am day cased for my IV's in August. I'm really hoping my lung function will have increased from these antibiotics before I start my IV's so then the IV's give me an EXTRA large boost but I'm not sure it really works like that, I'm no doctor!

Will be back soon with updates on my Lung function (hopefully good) and hopefully with some good genetics results!

Thursday, 26 July 2012

Having CF and preparing to try to start a family

          My posts on here will probably revolve a lot around Cystic Fibrosis and having a baby over the next few years as it's the stage in life we're at, but it holds far more complications than a normal person trying to have a baby.
         Firstly we have to discus it with far more people than you'd like to, I know if I didn't have CF I would discus it with my Marc and that would be it, until we could announce that we were pregnant but I have already had to speak to four people about the fact that we want to start trying today (and we don't even want to start until October) so that was my Physio, dietician, nurse and doctor. On top of that Marc and I have obviously talked about it, we have an appointment booked for him Monday at a genetic's clinic to find out if he carries the CF gene as that will add more complications(I will discus that in more detail after he has had the test, but please all have your fingers crossed for us that he is not a carrier) It's a 1 in 25 chance he could be a carrier, so quite high which makes me really nervous but we will just have to deal with it as it happens! (and if he is a carrier it makes it a 1 in 2 chance that our baby would have CF) Iv'e also discussed it with my Mum as she comes to a lot of my appointments with me, like today and also I will need her every step of the way especially as Marc works a lot and in London (We live in East Sussex) and he has told his brother as he wanted to discus the whole process with someone which is fair enough and they travel to work together so it's when they both get a lot off their chests to eachother as they have SO much time together, that's then led me talking to his girlfriend about it which she has been very supportive and she has a lovely little boy and another on the way any day!!!! exciting!! and I've obviously told my best friend. I haven't told my sisters for the very fact that they are already telling me I need to have a baby and they are so excited at the prospect that if they knew we were trying they would be relentless and if things didn't go to plan and it couldn't happen they would be as devastated as Marc and I! I'd rather just surprise them when it happens! Then I've obviously shared it on the CF Mums site as I know I will need their advice!

          So I told my Nurse first, she said my lung function was okay (58%), we all know it could be better, my best this year has been 71% but I am in desperate need of IV's and have just started some antibiotics to see me through to August when I'm going on IV's. She said on that we had the go ahead to start trying when we are ready. She explained how my lung function would be likely to be affected and that I would need to discus it with the doctor e.t.c.
     Then I told the dietician, she explained if I kept my weight where it is, that's a great start. That I would need to up my calcium to four portions a day(going to find that hard), would need to maybe decrease my vitamin A intake as that can be toxic to baby. And the big one is I need to keep check for Diabetes; as I was borderline on my last test so for the next 3 weeks I need to monitor my levels and keep a record to show Kings! I hate doing it as I have a huge needle phobia but got to get used to it, and it's not just for my health it's for our future. So I start that tonight and will report it back to them on the 14th August when I'm day cased for IV's. They also said to start folic acid a bit nearer the time which is something all ''normal'' people trying to conceive are advised and my sister in law says she has half a tub I can get started on which is great!!
          The physio didn't have much to hand over really except they have different techniques for physio as the pregnancy gets further on and that they would want to see me in hospital once a month at least which is fair enough and I will want to be assessed so I know I'm okay through out anyway. And then she said I did really good on the bleep test and she was really quite impressed (I was hanging after, sweat pouring and could barely breathe but I'm not giver upper!)
           Then I told the Doctor, she was really helpful actually, she said my Lung Function is fine to start trying but that obviously we'd like these Iv's to boost it then keep it up as much as possible as that would be better for me and baby. She said I would need to come off Azithromycin and couldn't have most antibiotics I have and that if it came to it I would possibly have to be de-sensitised to Ceftazadime whilst pregnant which scares the crap out of me but we will just have to cross that bridge when it comes to it! The reaction I had to that was when I was about 8, couldn't breathe, swelled up all over, itched everywhere, went dizzy, lost focus.... not something I'd like to redo but it would be desperate times calling for desperate measures. She also referred me to an ENT doctor as my sinuses are a bit weird and it's just another thing which might be able to be sorted to keep me well:) As sometimes it can be a real problem making me cough more than my actual lungs.

So they were all pretty up for helping me and didn't put too much negativity in. They asked if I would be ok having the baby there and I said it would probably work out better as I know them all and Marc works minutes away from there if he was at work when I needed him!

Friday, 20 July 2012

Happiness, Wedding and Broodiness

         I never know quite how to start my blog entry, one because I have so much to share as I haven't written for so long therefore I don't know which part to start at and two because I am just not a very creative writer!
         I'm guessing I should start with the most important fact, that I am now a MRS and I have been married 5 weeks tomorrow! It's gone so fast in some respects yet seems so long ago at the same time, how is that even possible?! The day before we got married, Marc graduated as a whole time London Fire fighter, this was one of the proudest moments of my life, he'd been trying to get in for the whole four years we've been together and before that then all good luck seemed to come at once and we were on top of the world. So the day before we wed we spent the day with close family in London for his pass out where he got his passed certificate and had to do a demonstration of some of the things he's learnt! He had been doing it part time local to us for the whole time we've been together so was used to the whole fireman thing but this was just so big to us and I really had to hold some happy tears back. Then to top it all off, when I didn't think I could be any more proud he also won an award which he got voted for by the rest of the people on his course and there instructors as most dedicated and worked the hardest (the award is one donated by parents of a young fire fighter who lost his life in one of the first days of his shifts as a fire fighter after passing out- four years ago I think) Marc's Mum is very emotional and she did really well the rest of the day but when it came to this there was no stopping her, happy tears of course. Then we all came home, and it was time for Marc to go back to ours where his parent's were staying too and I went to my Mums, not to see each other again until in the church!!! I was so excited, and surprisingly slept pretty well. My best friend Sian stayed over (maid of honour) and we put Bridesmaids on, but were fast asleep before we'd really watched any! In the morning we went and all got our hair and make up done - me, sian, my sisters (bridesmaids) and my Mum. Everyone kept telling me I was too calm and that everything was too relaxed, but that's because I'd organised everything (obviously I was a little nervous about things all coming together) but I had nothing to worry about, I was getting married to the man I love and know I want to be with the rest of my life! My photographer arrived, took lots of photo's which are beautiful and I got the book back last weekend with all the pictures in and I couldn't ask for better! Then she went to find the grooms men and my Dad arrived followed by our transport - a bright red hot rod with piercing yellow flames (to go with the whole fire theme) and Marc and his men obviously turned up in a vintage fire engine followed by a modern fire engine with a crew all dressed up ready to hold the guard of honour (axes) over our heads as we walked out the church. The ceremony was beautiful and even then neither of us were really nervous, except the most embarrassing thing did happen and my garter fell off and I didn't even notice and it was left at the alter!! haha, luckily the photographer was close behind and picked it up before too many people saw. Then when we were given a candle I by accident blew the one out we were supposed to light together so we had to borrow a lighter off a guest to re light! Then we came out the church, had photo after photo after photo. On arrival to the reception we had Pimms thanks to my Nan and Granddad paying for that! then we did a meet and greet line and everyone went it. We got speeches out the way first, my Dads was lovely, he cried which he thinks is highly embarrassing but I thought it just showed how much I mean to him. He then shared some embarrassing things about a house party I had at home once and what a mess everyone got in to, this just made everyone giggle, then Marc and I did a short speech thanking everyone then Dan (Marc's identical twin brother and best man) did a speech to remember, he was a little tipsy to say the least and did his speech justice, though it was just rinsing Marc the whole time but it was funny! Then the evening we had lots of people and lots of dancing and lots of food, everyone had a great time, and so did we. Marc and his grooms men even did a bit of full Monty style dancing in front of everyone and it was obviously planned as they all had matching illumenous green boxers on! Our first dance was beautiful, throwing the bouquet was a giggle, though the girl who caught it ended up in a massive fight with one of her ex that night and her parents and his parents very nearly had a bust up, luckily I was oblivious to all this at the time. By midnight I began to struggle, my Mum, Sister and there friends were begging the host for more music and I just wanted to go to bed, my dress was giving me a stitch by then and quite frankly I just wanted to get it off! Anyway my family got their wish of more music but everyone went to bed by 1am is! I wont go in to details of after that but our bridal suite was amazing and so was the jacuzzi bath!
            After our wedding we went on a short 3 night break/ honeymoon to just let it all sink in and get away for some alone time. I was gutted before, that we wouldn't be going on our proper honeymoon (Mexico) straight away but I found the New Forest was actually perfect, though it rained the whole time, we had a cosy little hotel room, where they did huge breakfasts included and we had bottles of bubbly from friends that we took with us and we just relaxed! I was a bit poorly, my lungs were struggling from all the business before and on the day and from carrying my dress and I actually couldn't of coped in Mexico as I needed antibiotics too soon after. So now I can look forward to my second honeymoon in Mexico in September knowing I've got IV's first in August so I will be at my best and can go and have a real good time!
           I'm not sure if I've mentioned in my blogs before or not but Marc and I were going to wait a couple of years before we look in to having a baby, he has had his gene test booked for a while which is on Monday 30th July but that was just so we knew. Anyway after getting married we have both been getting more and more broody so then we decided we'd wait a year and half then start trying so then we'd maybe have a baby by a couple of years instead of starting to try then. Well the whole reason for waiting was so we can buy our house first and so I could make a good start to my Open Uni degree, then I found out it's looking pretty slim that we will be able to get a mortgage even in a couple of years unless the economy has a sudden change and also we're renting off Marc's parents and what we pay them they are happy to continue living off anyway and as for my open uni course I can get the first bit completed (working within primary school) within the next year and then the other part is child development etc. so if I have my own child they can be my key study and so can all my nieces and nephews, so now if all goes well with Marc's gene test we have now decided to start trying when we get back from Mexico in October and now we've decided this, it is all I can think about! I'm excited, nervous, worried, what if's....are just going round and round my head! I also found out from one of my sister in laws that another of my sister in laws is going to start trying for her second in October too, this is so exciting but at the same time will make it extra hard to cope with if we have troubles conceiving etc.. Anyway at my next clinic appointment(26th July) I am going to talk to the pharmacist about what  medication I will need to come off and what I can have IV wise when I am pregnant as I am allergic to so many! Marc then has his gene test on 30th then it's just a waiting game for results as I've heard of it taking approx 6-10 weeks, just hope we have the results in time for when we get home from Mexico!
That's all I'm going to write about for now, Summer holidays started yesterday and I have so much planned already so not sure when I'll return with an update but hopefully the sun will start shining as my plans will much better suit some sunshine:D Especially the bootsale where we want to make a bit of money tomorrow and thorpe park Monday:D xx

Tuesday, 15 May 2012

24days, 19hours, 13 minutes and 2 seconds

I am that sad, that I have downloaded an app which keeps a countdown of exact days, hours, minutes and seconds until I should be arriving at the church to get married! It still feels quite surreal and I seem to be floating along counting down the days when suddenly I'l have a little panic that I have forgotten to do something and the absolute worst part is going to be finishing paying for everything!but we will do it and it is going to be entirely worth it because I only plan on getting married once, my husband to be is perfect and this day is going to be a massive part of our life and he deserves it to be the very best! Not only that on the Friday before the big day my Man should be finishing his training for his new job, which is another huge milestone in our lives together and something to celebrate, it's what he has been dreaming of even before we met and now he is getting there and it feels like everything is coming together ready for us to start a new chapter together as a married couple! He will have his dream job and my job is better (don't earn enough - but plan on starting a degree so even earning the little bit that I am is a bonus) and we will be married!
After the wedding we have 4 days to spend together before I go back to work, we wanted to go abroad immediately but Marc's new job wouldn't allow it so we have postponed that till September. So we plan on waking up Sunday morning and having breakfast at the hotel with all the guests that stayed, then we're going to head to New Forest to spend 3 nights there which I'm really excited for, we'll probably just stay in a travel lodge or whatever is cheapest because we want to keep as much money as we can for our honeymoon in September which is Mexico! and we want to do lots of activities and stuff out there!
After September we have 2 years to save a deposit up for our house as we want to buy the house we are renting off Marc's parents and they need the money to buy themselves somewhere in 2 years September. Its a lovely 3 bed house so it will hopefully do me and Marc for as long as we want to stay in the area (most likely forever) so it's quite a big deposit we need so it will be a very hard core saving 2 years! And  I've been thinking at the end of those 2 years we should try our hardest to get on another holiday to remember, we did America 2 years ago, Spain last year, Mexico this year, It will probably be Spain again next year (My Granddad lives there) then I'd love to do another amazing holiday once we've bought the house, Australia maybe? Man I need to win the lottery or find a really well paid job lol!
Now I'm getting into telling you my life plan I may as well continue, if it is that everyone hasn't clicked off the page already due to bordem. Marc and I would then love to start trying for a baby, now everyone with Cystic Fibrosis who is reading this will know it is not as simple as most find, there are so many factors we have to look at before even starting to try...Is Marc a carrier? Is my Lung function stable? Are the drugs I have okay when pregnant? then once all this is sorted...will I be able to get pregnant? will my body cope with pregnancy? I am so maternal it's just meant to be, but what if it cant? I get so broody all the time and would love one now but at the same  time I want to have the perfect as we can set up to bring a baby in to and I think 2 years will be great, if I can keep my health stable! I think I'm only desperate for one right now because I worry what if my Lung function gets worse over the 2 years? Or what If I'm unable to get pregnant and I want answers for those questions now! But I think I have just got to keep a level head and keep ploughing through because the last 2 years have absolutely flown by what with planning our wedding etc so what's to stop the next 2 years flying!?

Quick Health  Catch Up!
My lung function hasn't been done since my last clinic but am getting one done on the 31st which I'm desperate to know as I have been doing the ineb for a good few weeks now and want to know if I'm keeping my lung function up- I feel pretty good, just always seem to get a night cough back.

My blood sugars were apparently rather worrying high on my glucose test, so diabetes could be on the horizon and I have got to check my bloods for 2 solid weeks to keep record!

Kings have been very good and let me postpone my next Kings appointment to the summer holiday to fit in with my new job! Other than that I can get the nurses to come down to port flush and check lung function!

Wednesday, 11 April 2012

I am starting a new job on Monday, sooo nervous but at the same time extremely excited to get started as I know it is the perfect job for me! I have just applied to start an open Uni Course in October too:) (In Childhood and youth studies) I have gained so much experience over the last few years that I feel I really should work towards something so I can have more of a solid career! I mean I done my G.C.S.E'S and got my A levels then I felt I wasn't ready for uni. Marc and I moved in together and I was content just working. Marc got his dream job so now I'm in the mind set I really should get mine! (it will take me about 7 years to qualify because I'm doing it part time) but one day I plan to be a fully qualified primary school teacher:) I always wondered whether there would be much point me getting qualified because I hope for a baby at a young age, then will my health allow me to go back to work? But now I realise that's just silly, what's to say I will become to ill and what if I can't have a baby as in CF it's common to have many difficulties in getting pregnant/ giving birth etc. Then there's the fact that all these scientists and researches are working towards two possibly life changing drugs at the moment, I'll only regret it in ten years time if I don't start qualifying as something now! So my aim is to keep myself well, work hard and study hard and just see what the future brings with babies etc as we're planning it but unsure for when....
Well I am feeling CF again today, or am I just feeling like a normal exhausted person? I've had a week and a half off and have spent it -this last week doing heavy exercise with my Mum and little sis lol. Me and Mum are on diets with the wedding nearing and I have been blading which was amazing, exercise DVD and swimming! We're bike riding tomorrow then gym in the evening! This afternoon I'm recovering a little! Don't panic fellow CF'ers I have discussed the diet with my dietician and she is happy as long as it's controlled and my BMI remains above 22. I worked out that means I can go down to 8 stone 13 then I must stick, already down to 9 stone 2 from 9 stone 10 so not far to go, then I must Just keep up the exercise to tone but carry on eating to keep weight. Can't wait to try my wedding dress on again..eek! Like less than 8 weeks now!
My latest appointment at clinic was okay, except for being told that I don't see the doctor enough, even though I explain every time: that coming 2 hours for an hour appointment ruins my days off work and if anything dent my health more than anything! Well my lung function was 2.0 which I think worked out 67% so not bad, I would love to get it back in to the 70's but I would imagine I need Iv's for that and the hospital said I couldn't have Iv's last week (even though I thought I'd organised it with one of the nurses) because it was Easter and they had four days off, so we can't have tobi blood tests or home care organised until after but I can't do any other weeks because of work so they lumped me off with antibiotics - the same ones I always have! and we have now organised to wait until AUGUST! unless I get ill in the meantime. so no pre-wedding IV's:( got to count on staying well and orals. The next Iv's are pre-honeymoon as that's in September!
No-one will probably read this and I have gabbled on but if any one has then Hope your well and thanks for reading!

Thursday, 5 April 2012

6 months later...

Crumbs...Where has time gone? So I realised today I haven't done a lung function or seen any sort of CF related nurse or Doctor since October when I last had Iv's! Life has been pretty bliss and I've just been going with the flow of things! I mean a lot has happened since October...Christmas, Marc starting his new job, me getting a new job( which I start on the 16.04.12), family days out, My 21st Birthday (which me and my sister had a massive and amazing joint party for!) and My best friends 21st too!
Above is me and my fiancee at Christmas and on the right me and Amie at work xmas party where we got in trouble for being far too drunk!

Above our family day out to Madame Tussauds

My Best friends 21st Party!

Then these are the pics from mine and my sisters joint Birthday party!

Sorry that's my first time uploading pictures so there a bit all over the place and now I'm in a rush as it took longer than anticipated! So basically I'm real nervous now about my lung function in case it has dropped without me knowing! So I am prepared and have told them I want to start Iv's as I tend to have them 6 monthly anyway! Plus I need a boost as it's the last chance I've got before my wedding to fit in Iv's due to stating my new job! So wish me luck in that department as I have been trying so hard to keep well, pushed my self to go swimming once a week, every week, gym once a week and exercise dvd once a week and I am doing well!

Well best go as its at least a two hour journey! Which is why I hate going so much and make it happen so rare as the most annoying is when you only see them for half hour but have to take a whole day off work due to the travelling!

Hope everyone is well!

Friday, 9 March 2012

When someone else gets ill

When you have an illness yourself it's very strange to deal with someone else being ill, you always feel like it should be you in the hospital bed. I remember when my best friend was ill almost 6 years ago with a brain infection (encephalitis) and I was a wreck, I sat next to her bed and cried and cried and when her Dad came in he said not to worry and to just think about all the times that my friend had been the one sat next to my hospital bed and that she would pull through it so long as we all stayed strong and positive for her and she sure as hell did make a full recovery! It just came to mind as my little sister who is 9 has gone in to start Iv's today, she hasn't had Iv's for years and years, like I can't even remember when! She has chosen to have them as she keeps getting an irritating cough and wants to be as well as possible for my June wedding as she will be a bridesmaid! Bless her heart! I just remember the strops and cries I used to throw every three months (that used to be how often they used to be planned) when I was told I needed Iv's and I just think she is being so brave and I think she's a tough little cookie whose had a tough year with everything that's gone on (Mum and Dad splitting and the arguments they have now) Just thought I should have a little moment to emphasise my love for her! That brings me on to how pleased I am with Mum at the moment too, she has coped with everything so well and seems so happy now and we are getting super fit together on our gym, swim and exercise DVD every week! I'm so proud. Then of course there's my other sister who I just wouldn't be without and we are planning our joint 21st and 17th Birthday party at the moment. I just love my family. I get slightly sad when I think about my Dad, I love him to pieces as all the others but I miss him, even when I see him it feels different since our unit broke up! I feel like he wants to push me away because I do kind of push his new girlfriend out the picture as much as possible and with our birthdays and the wedding coming up it's all particularly awkward as he's not coming to our party because we didn't invite her! However I am looking forward to a birthday meal out with Dad, his partner, my sisters and Marc at the end of the month!

Wow that was getting a bit deep, but it's easier to write it, because if I say it I just get silly and emotional and if I don't I just get stressed.....

On to some absolutely awesome news, I have got myself a new job working with a child 1:1 in a school with individual needs, so I'm cutting my hours down a bit and I'm going to start an open University course too, so I can hopefully get a degree as I am definitely capable just don't want the whole uni life style as I love the life I have! I am still staying at my old job too for the school holidays which is just great so I get to see the young people and the staff still which is ideal because some of the friends I have made I would hate to drift apart from!
My partner has been training for his job for 5 weeks now! He trains in London so we only get to see each other at weekends at the moment! His course is meant to finish and he is meant to qualify on the 8th June...the day before our wedding! I am missing him soo Much and can't wait for us to be married and both settled in jobs! Then we have our honeymoon in September. This year is just busy busy busy but I wouldn't have it any other way!
Hope everyone is well!
Mogzi xxx

Thursday, 9 February 2012

What are the chances?

So I found out yesterday that an agency worker that occasionally comes to work at the place where I work also has Cystic Fibrosis! It's a small children's home in the middle of nowhere and I found out she actually lives in the same Town as me and I travel 45mins in to work so...what are the chances of that? We only found out through others as I have told absolutley all the full time staff at work and it's only that she told one of them and they were like 'ooo Marisa has that too!'. So we've obviously made sure management know now never to put us on shift together and I've just added her on Facebook so hopefully we can chat as I find it so exciting to meet someone else with the same and same interest of work too! Then we'll just be able to share a wave when we're next on the same shift together there as cross infection is too high risk with Cystic Fibrosis - It's general knowledge to us but I found when telling people why we can't meet up they found it really hard to understand!

Friday, 27 January 2012

2012 plans just keep getting busier, lets hope I can keep up!

Feeling a bit of a dip in my health at the moment, had a bit of a phlegmy chest so put myself on some antibiotics, during which I coughed up some blood:( the antibiotics have finished now and the phlegm is loads less and lighter however I feel extremely energyless and have a really irritating cough! I always seem to get an irritating cough when I get rid of all the phlegm but this time it's lasting longer than usual and at every opportunity I am in my pyjama's with my gorgeously soft blanket my Mum got me for Xmas and I'm drifting to sleep!
Yesterday me and Marc went to London to view a room he is renting for 5 months while he does his training there! This means I am only going to see him at weekends:( which is going to be really tough! and most weekends (3/4) I will be working! And guess what happens literally the day after he finishes his training? We are getting married!!!! roll on June! Anyway so his room was cool, everything he needs for his Mon- Fri training! He has got to do lots of study so luckily it's fairly quiet and secluded! and so for the next 5 months it seems he is going to be exhausted too! Just walking around London tired me out, mainly I think because I was trying to keep up with Marc and his twin bro but I managed and we walked from Elephant and Castle to London Bridge even though we had a travel card and walked past two tube stations, I didn't moan about this at all! They insisted on the walk so Marc could learn his way around, fair I guess!
As for 2012 plans here goes, Marc starts training on the 13th Feb, Mums sold her horse which gets picked up 12th Feb (reluctantly sold due to funding's since when Dad left) I'm going to move in with Mum as I will be far to lonely on my own in our house Mon - Fri for 5 whole months! I have lots of wedding planning to do as well which I'd love her helo like florist needs booking, getting our cake toppers made, having a hair practice and make - up, visiting the vicar, getting both our bands read, Marc needs to sort the suits, food tasting, paying money to all things that we have paid deposits and inviting people lol the list goes on! How Don't tell the bride do it in such little time I don't know!
After our wedding were going to take a short trip to Newquay or St Ives (we used to go there a lot when we first got together) as we have had to postpone our actual honeymoon to September due to Marc not being able to get time off straight after our wedding but it's fine and will be worth the wait! We're going to Mexico and I cant contain my excitement!
We also have another small holiday planned to Alton again to do Alton Towers, this time we're staying in a B and B instead of camping! Mum's found one that doesn't mind you ordering a takeaway and eating it in their lounge! Ideal for us! So another thing to look forward to!
This year as of 1st February I am also joining a gym and plan to do a swim once a week, a gym once a week and an exercise class once a week to start! Need to build my lung function back up, hope I can and get fit, toned and healthy for my wedding, holidays and honeymoon! My Granddad bless him is paying half while Marc is having to rent a second place as we can't afford anything! and paying for our wedding is really taking ALL our money!
Wow I have rambled on! hope you haven't fallen asleep reading this and hope your all well!
Take care
Mogzi x