So I wish I had A Time Turner Like Hermione!

My life at the moment seems to be very hectic. Which to be honest is amazing. I love that I can be this busy and do the things I want to do in my life.

Ill start with this article about me and the transplant games

Jersey boys was amazing, we went up by train and shopped on Oxford Street as soon as we got there. Then we headed to our hotel, which we literally booked the night before along with out train tickets. It was lovely. The off out we headed to meet Mel (love on the transplant list director) and we had the great pleasure of meeting loads of the team involved like editors ECT who you don't usually get to meet and I have to say I hope it’s not the last time we all meet. Sharing me and Stu's strange sense of humour and some extremely drunk conversation. I was an amazing night!! The next day we headed to the V&A after a huge fry up, which unfortunately I sicked up, not due to drunkenness but i think my bowl neuropathy. But the V&A was great; my favourite exhibition is the jewellery and Gems. I love it. The sparkling rings and tiaras steal me away. We then headed to Jersey boys 'Sherrie Sherrie baby, do do dooo dooo dooo doo' lol love it. It was so good. I loved every song and came out singing. We then went for a nice meal. The next day we were on the train at 12:15 after struggling all morning with my bowl neuropathy which decided to kick my ass, but eased up by the time we were heading home, i didn't fancy curling up in agony on the train. Also unfortunately my arthritis decided to creep up and remind me that it was still there and would still try and ruin my weekend. But I had none of it and continued to walk around despite my knee feeling like it was the size of a large melon.
So I got home and got propelled back into teaching tones of lessons. I decided that because i practically lost 70% of my hair i would have to get my clip in extension (which i only used for the wedding) cut so i could use them more often to thicken my hair. I love them so decided to go for something a bit more permanent. I'm going for the least damaging and easiest ones to put in when you have bold patches ECT. I'm very particular about my hair so it’s upset me a lot. But hey it a small side affect from the TAC and IV found a way around it.

I then headed up to leister on Thursday, there and back in a day but my mum came with me and did a great deal of the driving. I did a talk at a medical seminar. It was great and i think IV perfected my speaking now and feel really comfortable when I am. Mo DR at papworth said he would be getting in touch for any future talks. I was also hailed the highlight of the seminar. It was weird looking round there were lots of reps for different company's for NIV's and various different displays. There were so many there, yet they found it extremely hard to find me one i would get on with to travel with. Also the tech on the most modern ones was amazing. Skins like on a mobile phone, so you can personalise them!!

Friday we had our meeting for Kirstie's Big Breath Bike Ride, where we discussed a lot. We have a training plan now, t-shirt, giving page and many other things sorted. It’s all very exciting!!

My page: http://uk.virginmoneygiving.com/team/kirstiesbigbreathbikeride please read, sponsor, tweet and share this link we need as much help as possible!!!

I achieved a lot of new moves which was great, some really hard stuff and also i managed to come out black and blue and aching ridiculously!! My muscles still haven't recovered.
The leaving the pole jam i went home stuffed dinner down and drove all the way to London for clinic the next day. I met Hannah, who i had been talking to for a while. She had a heart transplant 7weeks ago and is looking great. It was great meeting her as not only do i get on with her in the on line world, but face to face she’s awesome and we seem to share the same sense of humour. Her mum Nicky was there to and she was great.

Here's a pic of us outside Harefield.

So Clinic went well lung function according to the doc's seems to have found its base line of 87% fev1 on harefields Spiro (it varies on different machines, hence me saying my lung functions 90%-100%) My fvc is 97% I’m very happy with this but i think it will increase a little once IV been infection free for a while. I'm having to nab pulmozyn, tobi and salbutamol to keep them sputum free and safe. I think I'm becoming a little obsessed about it, but i think it’s a good thing to be obsessed with.
So I'm back home, tomorrow I'm in diabetes clinic and CF clinic to see if they can come up with a plan for my bowl neuropathy as its causing me a lot of pain. I had another bad episode this morning. Then I'm off to thistle hotel to pay the booking fee for the 2nd Chance Ball I'm holding on 14th July to mark my year anniversary and raise lots of money for LLTGL.

Whilst iv been doing all of this iv been teaching roughly 12-18 lessons a week and rejuvenating my clothing line ready to sell on line on the web page being created for me. IV also just sorted out my first order for another pole company who have decided to take there clothing through me, which is fantastic and I'm very excited about it all.

There’s a lot of other things going on here and there. Along with preparations for my Brother Chris's first child, which I was allowed to name Luke Riley Mills. I'm helping to decorate the baby's room on Thursday, IV brought 3 little teddy bear pictures to hang on the wall and I'm thinking there present when the baby arrives as they have everything at the moment, a photo shoot of them as a family, geezz I'm welling up just thinking about it. I remember when they said I could name the baby I never thought I would be around to see it born and how i rushed to tell them the names as i thought i was going to dye. I can't wait. I love being an auntie to my other nieces and nephews and can't wait to see the brother first little tyke come along.

So that’s all for now. I hope you've managed to stick with this rather long blog till the end lol.

My rememberance note to debs x

11 year since your gone, I can still see you face in my mind perfectly. The way you smiled and the whole room smiled with you. I was only 10 and you just 16, I looked up to you, my inspiration in life. Everything I do is because you inspired me. When my mum told me you were going to go on the lung transplant list I knew it was sirious stuff. I cryed and cryed into my mums arms. devistated that things had got that bad. WHen you recieved that call i didn't know what to think. But knowing that you left us on the 27th of january 2001 My heart broke, it never truely recovered I can tell you that. I just sat there at first and all i would think was while i went swimming that morning with my firends you died.

I wonder what would have happend had your transplant had worked, what would you be doing now, artist, poetry writer, novelist maybe. You had a beautiful way of stringing those words together. I can't help think If you were still alive you would be 27, my husbands 27 you know.

The woodrow holiday sites been adding lots of pictures of you, I love the ones of you smilling and running around admitidly there are few. I hope your running around breathing easy now.

You know im so glad you were there for me when i was on ecmo. I know you were spurring me on and you got me through cos id had enough. But you knew that anyway.

I don't know what else to say debs, I wish you would have been here thats all, I know you woud have guided me through all this, prepared me, when I was little prepared.

Love always, thank you for making such an impact of my life. A shining star in the blackest of nights.

X


















http://www.venusofgen.com/

A year of blogging

Well, A Year yesterday I decided to start my blog. It was a decision to open my whole life to the public those willing to listen anyway. It was the start of soooo much.

I wanted people to be aware of CF and what going through transplant assessment, waiting and what I hoped then a transplant.

In a year, It has all been done, I have achieved fully what I set out to do, my story was followed by the Express and Echo, then ITV westcountry, Russel Howard and this was what lead to a very successful documentary.

I nearly died in the process and never thought my story would reach so far and wide, now abroad in Denmark, Germany and Belgium. I have also heard its going over to America!

Iv had many articals written and thousands of poeple contact me, lending there support and wishing me well.

I became an ambassador for Live Life then Give Life and proceeded on to Advocate.

I can't really sum this all up, amazing. I never thought a year ago I would be where I am now.

So I will carry this blog on and continue to do what I have been doing.

But a huge thank you to everyone who took the time to read and get involved in the most life changing year of my life.

THANK YOU

Honiton Community College ODR talk

Last Saturday I attended the speakers training with LLTGL session and it really helped me. I only realised how much when I came to do 2 talks yesterday to Honiton Community College 6form students. They sat and listened patiently as I went thought my ordeal and at the end bombarded me with lots of questions, which was great as it showed me they were interested. The questions were so varied some wanted to know things from a organ donation point of view then there were the scientific, cf and transplant related questions and the purely social and curiosity questions.

The younger 6forms were more curious on the whole. I guess youth are always more inquisitive.
My old science teacher who were there as head of teacher said how knowledgeable I was in a scientific sense but breaking down the information so it was easy for everyone to understand, this made me feel very happy. They also said that the students had said it was one of the most interesting and best talks they had had and that they felt I was better then most of the professional speaker they had had. I’m hoping to continue doing talks through to the rest of the school and im really looking forward to it.

I’m also hoping to get in touch with Exeter College and Exeter university and talk to there students.
Health wise im much better and I escaped clinic with no bronch yay. I have carried on the high intensity nebbing regime for now, but when I feel im al little bit more settled ill drop to one pulmozyne a day and leave the salbutamol nebs. But im being extra wary 2 infections in the space of 2months is not good and I need to preserve these lungs. Im hoping this is just the first year being the hardest like everyone says and it will all settle down. Don't get me wrong tho this is still amazing and im enjoying life every second I just don't want the constant threat of pseudomonas on my lungs.

Other things I have been teaching lots and I'm looking forward to a weekend away in london staying at a hotel and seeing Jersey Boys with Stuart. Second hotel weekend away for us since TX so looking forward to it. Were also going to go oxford street and hopfully go to a museum.

Whats been going on

Well what Have i been up to. My business is really going well, lots of new students and new additions to my fitness clothing range for pole. I'm so excited about thinks to come. I'm doing my ETM in march, my first aid course and PDC approval (pole dance community) All things Iv wanted to do but were just to sick to. The ETM means I will be able to do other fitness class's such as a group Pole Conditioning class, stretch and tone, LBT and Aerobics to name a few. I'm also really interested in doing A Weight and Nutrition Management course and help people reach there body and fitness goals. Iv also been in DM, Daily Star, Times, Sun, Metro and Express and Echo about my return to work, which over those 2 days gives a total circulation figure (the number of people who will have read it) as a staggering 48,891,425! omg!

Other thinks, I am now the face of the transplant games and will be participating although I'm not sure in what activity, need to have a think about that.

Iv also been organising my charity ball, 2nd Chance Ball and Kirstie's Big Breath Bike ride. The meeting for those wishing to participate is to be held on the 27th from 12:00 till 14:00 at the RD&E meeting room. You can just drop in and received some information about the ride if you've only got a short amount of time. There will be printed info for you to take away and sponsor froms.

On the 26th of this month iv been asked to speak at a seminar about transplant, I was asked by a doctor who was at the last one I did for medical students. I'm very excited and glad that I made such an in pact to be asked again.

Also on the 18th I'm going my first talk in a school to six form students I can't wait! I'm looking forward to educating the youth about ODR.

Tomorrow I'm up to London to do the speaker training course with LLTGL, which I hope will just iron out my speaking techniques.

Unfortunately this week my Lung Function Dropped alot and I had to go to Exeter Hospital and start IV antibiotics. I was running temperatures and felt rather poorly. It came completely out of the blue. I started IV's and my lung function went up then down and then up again. Im hoping it stays up as I have a appointment at harefield to see if I need a bronch Tuesday, I really don't want a bronch, one as the last one fractured my tooth and I had to have it rebuilt at the dentist this week and also because I have so many new students booked in I don't want to reschedule with them. So I'm home on home IV's and heading to London 2mz for the training session and clinic, I'm working hard to get my lung function up and went to the gym earlier. Very happy with how it went

Also here's another article that was in the express and echo I really like this one!

Other things planned, Aerial Hoop intensive training on the 18 &19 Feb and I also really want to start adult gymnastics to help with my pole work and I would just love to do it, I used to as a kid and was a natural.

3 years together

Well it has been 3years since me and my Husband made our relationship official.

So I am going to reminisce over our relationship and how we got together. It was sometime earlier November; I had finished work at a call centre I was temping at. I was 19 and dressed in trousers and a jumper, with short pixie ish hair and turquoise green eye make up. Me and my friend had meet up after I had finished work and went to the ozzy bar to meet a load of guys she had worked with (she fancied one of them at the time) We all had a laugh and got extremely drunk, I wasn't ment to be staying out but, well I did. Me and Stu shared a drunken snog, but I don't think either of use thought much of it at the time. It was all part of the Monday madness (not that I do around kissing random guys id just meet) There was something about Stu I liked, he was cheeky, silly and to be honest I didn't really take him that seriously.

We carried on the tradition of Monday madness and became good friends over face book, I never shed away from telling him about my CF, It was part of me and IV never been shy about anything.
As we chatted away, I began to thing; I might actually like this guy.

The I was out with some other friends and saw him looking rather nice and something just changed in my head, like a light bulb went off, I continued to conveniently turn up where ever he was in the club, some might call it stalking but hey it worked. Well sort of, we danced the night away and I flirted with him all night, but did he kiss me...............................................................No gutted. I couldn't believe it.

The next day chatting away on facebook and as I said im not shy, so I asked him why he didn't kiss me. Apparently he was oblivious to the fact. Silly boy. Well he asked if he would get another chance and I said only if he took me out on a date that night.

He did, after hours of talking about his self and watching twilight, I went to leave, he still hadn't kissed me and as un shy as I was, I wasn't going to kiss him first. I went to get out of the car knowing if he let me walk out that would be it and his chance would be lost forever. 'Aren’t you forgetting something' that was our first real kiss.

It was drawing close to Christmas and we spent most of the time together, both denying that we wanted a relationship.

Then it came to New Years Eve, I had built it up in my head, he was going to ask me out when the clock struck 12 and he actually was. But instead I’m pretty sure my drink was spiked and he ended up carrying me home, the next day he asked me if we wanted to make our relationship official while both lying very hung over in bed.

That was that, our relationship seemed to come out of partying, drunkenness, fun and laughter, our relationship is still full fun and laughter. Every second with Stuart is full of jokes and smiles.
I always needed someone with a sense of humour and I found him, my rock.

I defently wouldn't have guessed we’d be together 3 years later, it was becoming a running joke with my mum that I got to the year point and would bolt :-/ so when we went straight past it, I think I knew it was forever

PLans for the new year!

Iv been thinking alot recently about where I'm going in life now I have new lungs. So I thought id tell you my plans for the new year.

Go on a proper Honey Moon with Stu, were thinking the Elysium where we were originally going to get married. That also means I'll cross it off my lungs task list, Yay.

Breed my little puppster and have a house full of pups, very excited for this, now just need to find a make cavapoo with champaign colouring for the most gorgeous pups ever.

Create a website for my pole dancing lesson. I'm already on this, Iv organised a photo shoot.

Sell my clothing on line and also create clothing for other pole company's. On it.

Do some work experience with RD&E with there PR team and some behind the camera work experience.

Learn Aerial Hoop, its a must for this year and I'm very excited about it, hoping to do some in January.

Get fitter! Must build up leg muscle for cycle ride.

Cycle once a week with Stuart, to build up leg muscle for cycle ride.

Fine tune my pole technique and perfect the 3 moves I lost from being so ill, but now have regained but just arnt quite there yet.

Run my two charity event successfully and raise lots of money.

sign up more people to the organ donor register.

Talk in schools/colleges/unis about Organ Donation.

Carry on being organised.

Just be successful at life.



So there are a few of my goals for the new year. Hope you all had a great time.

I went for a meal with Stu and the just chilled out as we were at a wedding in London the previous night and weren't quite up for another party, but it was lovely spending some alone time with my hubby.

New years

Wedding

Wedding