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Savejess and goings on...

Posted Oct 05 2009 10:02pm
Wow! The past week has been full of real drive and determination to do what I can in an attempt to save Jess. The LLTGL team and supporters have all really come together to help get Jess' journey exposure in the media by as many means and ways as possible. I have done a bit of twittering only to find, as I hugely suspected, that I was doing it all a bit Pete Tong!

O well, I tried and now I've been safely steered on the right path I can proceed properly. It sounds like the team have been very successful drumming up some celeb support but we want more!

I managed to create a poster for the savejess campaign and distributed them locally with donor leaflets outside my local hospital last Saturday. Click here to have a look!

Had a nice time last weekend mainly because I was very lucky to meet a very talented lady photographer Imogen Freeland. She is working on what will be a truly amazing project which depicts individuals who have overcome or are dealing with serious illnesses. I could gush about her work for hours as she has really blown me away. For someone so young, she really is a true star...a professional and I am 100% behind her work. Please take a look and I think you'll agree that she is just uber amazing...I just get drawn into every photograph...I am a big fan as you may be able to tell. She hopes to exhibit her work and also submit as part of her university work. We hope to work together more in the future, so watch this space!

As many of you know I am learning (albeit rather slowly) about photography and Imogen has really inspired me.

Here's a pic of us being a teeny bit silly at the end of the photoshoot:





I have had my flight assessment and the great news is I can fly. The crummy news is I have to have oxygen on board. Both myself and my consultant are a bit shocked that my levels plummetted so dramatically as my blood gases on room air were recorded as really good. It just shows how sensitive I am and that my rollercoaster antics are always a real possiblity. Its a little scary that I am tempermental but I am always quite prepared for that. My desire to fly and to do so imminently is represented by the resultd of the fitness to fly test. From what I understand, my oxygen was reduced to a mere 15% and within minutes my sats dropped dramatically. Although a drop in figures is normal mine dropped very significantly. I could feel it to be honest as I felt somewhat light headed and was struggling a bit. I was told to stop talking all the time (can you believe) and that I should consider this for the real flight!!

I have been mega lucky to have the help of my friends with 'operation sort it out' at my home. M and J came Saturday night and I decided not to resist help, but to fully embrace it. I did find this incredibly difficult to the point where I lay on the sofa and left them to it! I owe so so many dinners to friends now! I am planning

I made up a few card orders this week, which felt a bit odd as I haven't done any for months and months. My inspired chic cards and gifts gain interest from family and friends (thankfully) and now I am working on my Christmas Collection!! I am hoping to them at an event this weekend (Hungamunga) and then the following weekend at my friends' parents openhouse exhibition. The last time I went I was strapped to my oxygen and I think I recall taking my oxygen concentrator. I was petrified that the cat might have a lil chew on it!

Playing with my friends' little bundles of joy has been great this week...I met lil L and lil C this week and it was great interacting with them and enjoying time together. There was lots of chocci biscuits, jelly tots and cake going round! Despite me having very little to virtually no contact with children for the past couple of years, its funny how mannerisms and instincts just come back and I felt like how I used to be in my nannying role!

Sometime soon I will be going on my first post transplant holiday and I really cannot wait. I will obviously fill you in and maybe even bore you. I am looking forward to endless hours of nothingness...maybe the odd read, some music therapy via my ipod, but not too loud so I can hear the crash of the waves...

I have been reflecting this week on my terrible sleep patterns which has now been going on for nearly two years. It has got worse post transplant and I am starting to get increasingly concerned. Just as it was getting a bit better (2am instead of 3am!!), I then moved home and so its reverted back to 3am/4am. Its just making me ratty and constantly tired. I have been missing my naps a lot this week and that really hasn't helped me at all. Its imperative that I have that rest break. I am useless otherwise!

Today myself and my home help went up to the rooftop garden to pick some herbs for cooking which was really nice. The crisp fresh air is so good for me...I really do notice a difference in a room when the window is shut. The air feels heavy and my breathing is more erratic and difficult. Its not nice as it reminds me of pre transplant. I have to remember that I have come a really long way since then but at the same time, I am reminded that my lung function is still quite seriously low and so I really need to look after myself and not take my body for granted.

The unpacking process continues and I know it will do for some time but I hope that I can get my home looking complete even if it is not! Reckon i'm not too far from the finishing line which is great. Then the real organising can begin in a piecemeal fashion.

It would be nice to sit back watch a DVD, read some chapters of my book, not have to rush through the weekend papers...but that is all to come. That is what life is about, well to me. Enjoyment, fufilment and relaxation. This week I even found myself rushing through my tai chi session so I could quickly do x and y before my home helper arrived.

I have some more fun events will be taking place this Autumn and Winter...its a great time of year to get on those party frocks, put on some statement makeup and put on a bit of a show basically. There is something very much missing in my life and you will laugh when I say, 'drama'. I was very much into acting and I took a GCSE in it just for fun when studying my A-levels. I love getting into role, working with different people, observing the set and utitilising the stage effectively, engaging with an audience...the rehearsals and the physical and spiritual drain can be overwhelming. I am thinking of getting involved in set or costume design initially in order to avoid getting too exhausted and then tip toe back into the limelight, lol! There are loads of amateur dramatic groups, just a matter of finding one that is proactive and hardworking.

I managed to ship off some ebay bundles this week after sales at the weekend. I found it easier to quickly, but carefully pack items so that I wouldnt have second thoughts. I just hope they all go to good homes. Many bits are new or worn once so they really are great bargains!

I have deifinitely noticed the drop in temperature in the evenings this week. My problem is, if I pop the central heating on...I find breathing very difficult and without it I freeze! Great! I just find myself with a blanket wrapped around me and one over my shoulders. I really must get a big, fluffy, huge, hooded dressing gown. Think many have been discarded as they are what I live in when in hospital. I got some from lovely Primark and sadly they didnt wash up well. I think next do some nice ones so I might have a peek!

O we're coming to the end of LFW (London Fashion Week) and my friends and I had planned to go to an event at the weekend where you can see a show and then try and buy some samples showcased throughout the week. We chose instead to go to other things but hopefully we will go next year! I only saw once pair of shoe boots I loved on a so called 'plus size' model who was one of the few healthy looking ladies. This world is truly bonkers when the message is that size 10-12 is big? Yes, they are referring to the fashion world but its connotations are far more wide spread into the real world.

I know the weather is predicted to be lovely this weekend and I am one of many to choose to indulge in a bit of sunbathing. But then I think of lovely lil Jess and that she will probably only get to stare out the window at the sun. Imagining the feeling of enjoying being out with her mates. Knowing that she could soon in a matter of a few months be able to do just as she hopes. Relying on oxygen to stay alive is no walk in the park...its not a cure for degenerative, failing lungs. They will keep scarring and scarring, there is no reverse. You might seem better on a given day, but thats just it. Seem. I remember my mates thinking I was getting better. Sometimes I would just leave them to think that because it made them happy. I think when you are living on borrowed time, there is little space for delusions...you just have to face the facts. Its so tough...

I am about to pop over to the savejess website and buy a save jess t-shirt to get more support for the amazing campaign that has has people talking all week. Thanks to some very special, hardworking people in the team of LLTGL there have been several radio and television appearances and celebrity support via Twitter.

Please do continue to share Jess' journey, my journey...the benefits of organ donation can be profound...for a young person to have extra time to live their dreams... who can deny her that?

Please twitter #savejess

There are also some savejess stickers that I have created. I often put the organ donation stickers on all correspondence envelopes, on the back of my inspired chic cards and gifts that I sell. It made sense to me to then create stickers to use in the same way. They may be amended over the next few days, but I will let you know! Please email me : loulou787@lltgl.org.uk if you would like a copy of the template!!!
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