tag:blogger.com,1999:blog-17880255876363930822024-03-13T08:19:58.906-07:00Thrombosis SupportAnonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.comBlogger29125tag:blogger.com,1999:blog-1788025587636393082.post-4376219499708960152014-10-03T03:08:00.000-07:002014-10-03T03:12:23.522-07:00World Thrombosis Day Count Down<div dir="ltr" style="text-align: left;" trbidi="on">
<a href="http://free.timeanddate.com/countdown/i4cs29s9/n136/cf111/cm0/cu4/ct0/cs0/ca0/cr0/ss0/cac000/cpc000/pc009/tcf00/fn3/fs120/szw320/szh135/tatCountdown%20To/tac000/tptTime%20since%20Event%20started%20in/tpc000/matWorld%20Thrombosis%20Day/mac000/mpc000/iso2014-10-13T09:30:00/pd2" target="_blank">Countdown to World Thrombosis Day</a><br />
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So it has been an incredibly busy few months, now working as Lifeblood's Project Manager. The first big event I have been working with Lifeblood towards is for World Thrombosis Day.</div>
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We will be running an event at St.Thomas' hospital for professionals and public- a joint learning experience to promote understanding and awareness of VTE.</div>
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For all the information visit the website page <a href="http://www.thrombosis-charity.org.uk/world-thrombosis-day.php" target="_blank">here</a></div>
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After the event we have the Lifeblood VTE Awards over at the Houses of Commons and with the help of the fabulous Lifeblood Trustee Paul Westerman we have celebrity TV Drs, Dr Dawn Harper and Dr James Logan. I am really looking forward to a fabulous day, and much needed rest after it as I move house 3 days earlier!!!</div>
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Oh and in other news- I got married!!!</div>
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Please support Lifeblood: The Thrombosis Charity and World Thrombosis Day. Together we can make a difference and spread awareness and change lives.</div>
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Help me, help you, help others, help themselves</div>
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Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-75693434884501869322014-06-23T08:16:00.002-07:002014-06-23T08:16:39.548-07:00Officially working for Lifeblood....... and getting married this year!<div dir="ltr" style="text-align: left;" trbidi="on">
So it has been a super busy few months, with some incredibly exciting things happening.<br />
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After a year of talking at them, sending lots of idea emails and being a trustee for a short space of time, I have now secured a job with the ever growing <a href="http://www.thrombosis-charity.org.uk/" target="_blank">Lifeblood:The Thrombosis Charity</a>. I am thrilled to be working for a charity that is passionate about raising awareness and offer support to those affected by thrombosis. I really hope that I am able to assist them to continue with their fabulous work.<br />
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<a href="http://www.thrombosis-charity.org.uk/buddy-system.php" target="_blank">Lifeblood Buddies</a> is going from strength to strength and I am always looking for more buddies and ideas of how to make it better. I am also hoping to soon set up a local support group which can act as a pro forma for support groups nationally.<br />
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<span style="background-color: white; color: #37404e; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px;">Lifeblood Buddies is looking for more Buddies! Have you been affected by thrombosis? Maybe you lost a loved one to thrombosis, saw the effects in your loved one, or have had a thrombosis yourself. Thrombosis has a huge impact on our lives </span><span class="text_exposed_show" style="background-color: white; color: #37404e; display: inline; font-family: Helvetica, Arial, 'lucida grande', tahoma, verdana, arial, sans-serif; font-size: 14px; line-height: 20px;">and Lifeblood Buddies is here to pair up people who have been affected by thrombosis to offer mutual support and friendship- someone who can understand where you are coming from and maybe offer some advice, share stories which each other, laugh, cry, moan, plan a fundraiser, the list goes on! By coming together we can share our experiences, spread awareness, offer each other support and not go it alone. For more information email katherine@lifeblood-charity.com or got to out Lifeblood Buddies page on our website <a href="http://www.thrombosis-charity.org.uk/buddy-system.php" rel="nofollow nofollow" style="color: #3b5998; cursor: pointer; text-decoration: none;" target="_blank">http://www.thrombosis-charity.org.uk/buddy-system.php</a></span><br />
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I also have some very exciting personal news- I am getting married this year!!<br />
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After everything with the blood clots, having to leave my previous job, being in and out of hospital, feeling incredibly broke; a wedding seemed to never be something James and I could afford- however with very generous parents, a clearer perspective on what is about, being married to James and not a huge wedding day I am happy to say we are going for it. If I have learnt anything through all that has happened, it is that if you are lucky enough to have your life, you can not put it on hold- all the things I want can happen, we just may need to purchase a number of footstools to scatter around the venue should I need to rest my leg!<br />
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So that is it in a nutshell- I will be sure to update you all soon with the developments of my role with Lifeblood.<br />
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For anything thrombosis support related you can contact me at katherine@lifeblood-charity.com<br />
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Help me, help you, help others, help themselves!<br />
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Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-53251414732255623352014-04-10T06:02:00.001-07:002014-04-10T06:02:34.060-07:00Psychological Impact of Thrombosis<div dir="ltr" style="text-align: left;" trbidi="on">
Mental health, depression, anxiety, fear, disassociation, isolation, adjustment disorder, PTSD the list goes on, but even me typing those words feels a little strange and that they should come out in a slightly faded, not quite visible font. Issues around mental health and our emotional responses still seem to me a taboo subject- but it is there, the emotional effects can sometimes be even bigger than the physical effects of the thrombosis, especially if you are the person left behind. You may have no physical disability, but a part of you is missing, has been taken away, brutally, without warning, without explanation and often, though not always, without any empathic acknowledgement of your feelings from the health care professionals you entrust yours or your loved ones life with.<br />
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Dr Simon Noble Medical Director of Lifeblood has had his research paper published in the British Medical Journal which can be read <a href="http://m.bmjopen.bmj.com/content/4/4/e004561.long" target="_blank">here</a> on the long term psychological consequences of symptomatic pulmonary embolism. I am so grateful to him, his colleagues and the participants for doing it. It highlights an area where more research needs to be done, and shows how important it is to give and hear the patient's voice. The medical professionals we meet along our journey can hopefully offer us the information that we need regarding the procedures, medication and condition we have, however what they can not do is tell us how to feel, nor can they rob us of this. I remember after having my CT scan in a busy corridor, sitting in a make shift wheelchair with leg extension, as I had my leg in a locked knee brace, feeling scared, confused about what was happening and unable to breath. It was there in a corridor that I was told I had multiple PE's, I was in a state of shock, feeling scared and unsupported I will never forget what a doctor seeing my state told me 'stop being silly and calm down- you are only making things worse'. I was shaking and my teeth were chattering, I was having an reaction to the dye used in the scan, and a reaction to the news I had just received in a busy hospital CORRIDOR- I wanted to scream at him, but I couldn't breath let alone form words. How was that helpful? Did he even think before he spoke? What I needed was someone to acknowledge what was going on for me, to tell me that I was having a reaction to the dye, to acknowledge that what I had been told was a lot to take it- to explain to me what that meant, to give me support- not to tell me to stop being silly- being silly was I?<br />
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For more information about how you can get and give support to those affected by thrombosis join Lifeblood Buddies <a href="http://www.thrombosis-charity.org.uk/buddy-system.php" target="_blank">here</a><br />
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Help me, help you, help others, help themselves<br />
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Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-26932142183662333742014-03-24T10:29:00.000-07:002014-03-24T10:29:58.050-07:00Never thought I'd be here.......Trainee Psychotherapist, Lifeblood Trustee, Lifeblood Buddies, Patient Day.....<div dir="ltr" style="text-align: left;" trbidi="on">
I had a really lovely evening last night with a dear dear friend of mine who has totally turned her life around after a diagnosis completely changed her world a number of years ago. We were speaking about all the projects and jobs she is doing and were speaking about having faith that where you are today is exactly where you are supposed to be, and had everything not happened to her she wouldn't be doing what she is doing today and incidentally loving it!<br />
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It made me reflect on my life, my path and what I am now doing, or certainly journeying towards doing and how, difficult as it has been at times I am exactly where I need to be.<br />
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I trained as an actor musician and did various acting and teaching jobs over the years as well as working as an estate agent. In 2010 when I met my now fiancé I was working as an estate agent, living with a friend from drama school and just getting on with my life. I wasn't really sure whether being an estate agent was what I really wanted to do, or how I had really gotten there but after my dreams of going on tour had been shattered and with knees that kept letting my down and a bank balance that needed boosting, a stable, steady job seemed the place for me. When my knee started playing up again I thought the surgery I had would take me out of action for a couple of months tops, I never imagined I would never work as an estate agent again, or suddenly live with a permanent condition, PTS, after a DVT and multiple PE's.<br />
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I am now re-training in psychotherapy and counselling, am a trustee for Lifeblood: The Thrombosis Charity, am heading up Lifeblood Buddies and am a speaker at the first ever patient day in National Thrombosis Week. Sometimes I really do wonder how on earth I got here, but I know that this is where I am supposed to be.<br />
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I remember speaking with a friend some years ago when I was again a 'resting' actor and getting pretty fed up of waiting for something to happen. I wanted to be happy but was so confused about what that meant and everything I did seemed really to be for other people and not my own happiness, answering the question, 'what do you truly want?' is I think one of the hardest questions. My friend told me to go through every job I had ever had, every thing I had done and find the link, find what I really loved about it, what made me tick. My answer: helping people, helping people change/discover their potential, give them support. Even when I was in a theatre show which at the time I hoped would be my 'big break' I spent my time helping the new cast member learn all the dance routines, when I worked as an estate agent I always struggled with the fact that 'our client' was actually the person selling the property not buying, I wasn't someone who really cared for a demanding seller, and getting the best fee possible, what I cared about was meeting an applicant, getting to know them and finding them a property that fit their needs, it was about helping that person find what fits. That's what I am about today.<br />
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My re-training is at times really full on, but I am loving it. When I am sitting with a client, being able to really be there for someone and give them a space, it feels right. When I am teaching singing and helping someone reach THEIR goal no matter what that is, it feels right. When I am sat at home and I think of another idea for Lifeblood, it feels right, though sometimes I wish I could run before I can walk, I know I will get there.<br />
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Lifeblood Buddies is the first step in, I hope, a focus on support for those affected by thrombosis for Lifeblood. When I was diagnosed and went from being a relatively active, fit young women recovering from knee surgery, to feeling old before my time, it crushed me. I didn't understand why it had happened and I certainly didn't realise that nothing would be the same again. However if that hadn't have happened where would I be today? Still working as an estate agent? Would I be engaged? Would I be re-training? Would I have found what makes me happy or would I still be chasing someone else's dream?<br />
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Lifeblood Buddies is there to help you connect with someone who just may understand what you are going through when your world is changed after a thrombosis. I know I needed it. I wanted to be able to express how I was feeling when I was in the hospital not understanding what was going on in my young body. Someone who would understand how the prospect of going to a social event scared me and anxiety took over to the point where I would make up an excuse to get out of it, where I didn't feel able to fully express to those who didn't really understand how everything was making me feel.<br />
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If you think you could benefit from joining Lifeblood Buddies, or know someone who you think could click <a href="https://docs.google.com/forms/d/1qGk9LfUG6upQ-qAn0NZAldxNXCHRfCEPTTIk7lxyrx0/viewform" target="_blank">here</a> to go to the application form.<br />
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This National Thrombosis Week is 5th-9th May and Lifeblood is having it's first ever patient day. The patient day is exactly that, a day dedicated to patients, where you can meet others who have been affected, listen to talks about Post Thrombotic Syndrome, anti-coagulation, the psychological affect of thrombosis and hear patient stories. For more information and to book you place click <a href="http://www.thrombosis-charity.org.uk/national-thrombosis-week-2014.php" target="_blank">here</a>.<br />
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Help me, help you, help others, help themselves.<br />
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Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-56065612664708278422014-02-24T04:52:00.001-08:002014-02-24T04:52:19.113-08:00Lifeblood Buddies!!!<div dir="ltr" style="text-align: left;" trbidi="on">
So we had a few teething problems but Lifeblood Buddies is now hopefully all tweaked and ready to go!<br />
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Lifeblood buddies is there for anyone who has been affected by a thrombosis- anytime in their life.<br />
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Maybe you had a DVT, PE or any other VTE episode, maybe this has totally changed your life. Maybe you have come back to full health after an episode, perhaps you lost a loved one due to the condition, or know of someone affected by it. Whether you have just been affected or this has been part of you life for a number of years <a href="https://docs.google.com/forms/d/1qGk9LfUG6upQ-qAn0NZAldxNXCHRfCEPTTIk7lxyrx0/viewform" target="_blank">Lifeblood Buddies</a> would love you to join.<br />
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However thrombosis has affected you, your experience can be highly beneficial to someone else, and likewise theirs to you- to be able to have 1-1 contact with someone who just gets it, who can empathise rather than sympathise- who can be with you through the feelings, help you out with practical tasks, have a glass or two of wine, gin, tea or whatever! and talk it out- that's what Lifeblood Buddies is about.<br />
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Sometime life throws you stuff- <a href="https://docs.google.com/forms/d/1qGk9LfUG6upQ-qAn0NZAldxNXCHRfCEPTTIk7lxyrx0/viewform" target="_blank">Lifeblood Buddies</a> shows you you are not alone and helps you to keep going, take a break, let off some steam or whatever it is you need.<br />
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Sign up to <a href="https://docs.google.com/forms/d/1qGk9LfUG6upQ-qAn0NZAldxNXCHRfCEPTTIk7lxyrx0/viewform" target="_blank">Lifeblood Buddies</a> today!<br />
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Help me, help you, help others, help themselves!<br />
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Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-38130701296487865772014-01-13T14:30:00.000-08:002014-01-14T14:41:01.166-08:00Lifeblood Buddies Launched!<div dir="ltr" style="text-align: left;" trbidi="on">
Its been a long while since I have posted anything, and this is for a combination of reasons, life has a way of running away with you sometimes.<br />
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As many of you know who follow my blog or know me, I am passionate about creating more support for those who have been affected by thrombosis and have been working with Lifeblood for the last 6 months or so on this.<br />
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I am very excited to announce that the first initiative has been launched today!!<br />
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The Lifeblood Buddy System is a mutual support system aimed to help match those affected by thrombosis in order to be able to offer each other support and advice. Giving people the opportunity to have someone at the end of the phone, the email or to meet up with who can really understand what they are going through. We are also going to have the first ever Patient Day in National Thrombosis Week- so lots of exciting things happening in 2014.<br />
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I really hope this is just the beginning of bigger things on the patient support side. Unfortunately thrombosis does continue to affect people and take lives and together we can get through that and cope with day to day life.<br />
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For more information go to <a href="http://www.thrombosis-charity.org.uk/">www.thrombosis-charity.org.uk</a> and to take part in the buddy system click <a href="https://docs.google.com/forms/d/1qGk9LfUG6upQ-qAn0NZAldxNXCHRfCEPTTIk7lxyrx0/viewform" target="_blank">here</a><br />
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Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-63906960981801902432013-07-15T08:49:00.002-07:002013-07-15T08:49:33.703-07:00Thrombosis Changes Lives...........<div dir="ltr" style="text-align: left;" trbidi="on">
Its been a while since I have posted and today after my morning gym routine I notice an update on the Lifeblood: The Thrombosis Charity facebook group that made me stop and think.......<br />
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...... the first line said, "Well I get my scan on Wednesday, to see if my leg can be saved......" Wow- it really hit me, this person could lose their leg, a simple sports injury and months later they could lose their leg.<br />
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There was something about it happening to someone else that made it more real for me. After a DVT and PE's I now suffer from PTS and have a pretty damning report from a top vascular consultant about all the conditions I am very likely to get due to the severity of my PTS and how limb amputation is something too that could happen to me should my veins get so bad and as a result of the leg ulceration I may get. But it all feels like a narrative, a non reality, but today reading this post from someone I feel like I know through the Lifeblood facebook group, the reality of how much Thrombosis can change your life, and does change lives really hit me. All this could have been prevented, I know it is only a could and not a definite but surely it is worth while fighting for something that may be able to change lives, save lives and prevent complications like this happening. Lifeblood work tirelessly to promote thrombosis awareness in and out of the NHS, and to ensure better preventative practices are in place. My just giving page is still open and if you feel able to please donate, <a href="http://www.justgiving.com/katherineelizabeth" target="_blank">www.justgiving.com/katherineelizabeth </a><br />
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One day the post I read today could be me, that IS my reality. PTS is a permanent condition, a complication of DVT's and PE's. It affects me everyday. I am trying my hardest to be fitter and in better health and self manage my condition, but what if I can't, and I do find myself in a similar situation to that of my facebook friend. I have already had to totally change my lifestyle, re-train for a new job, imagine just how that would be, and how all the other people affected by thrombosis what they go through, imagine what that sudden change feels likes.<br />
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You have a routine operation, you go on a plane, you work in a job where you sit alot, you injury yourself doing sport, you take the contraceptive pill, you fall pregnant, you just go about living your life and then one day everything changes. A blood clot, it prevents the flow of blood around your body, you're in pain, crazy amounts of pain that feels like it came from nowhere, or maybe you feel nothing, no pain at all, then you can't breathe, you feel old before your time, then everything changes- maybe it wasn't found soon enough and your family have to grieve the sudden loss of a loved one, or maybe it was and you are one of the lucky ones but life will never be the same for you again. Hospital appointments, blood thinning medication, compressions stockings, perhaps thats it- the clot has gone and while the situation was scary you can carry on with your life, grateful for the knowledge you now have of what that mysterious pain could be, or maybe this isn't it but the start of a totally different you, a you that has to learn to know their limits, change their lifestyle, think about a new career, adapt their home, lean on others, lose their independence, lose their leg. Now like this facebook friend, it doesn't have to be doom and gloom and I am so humbled by their positivity and bravery, but that requires support, and not everyone is able to deal with what life throws at them. I wasn't offered any support from my hospital & I am forever grateful for the support I have from loved ones around me, but I got nothing from the consultant or vascular team. 'Your life has totally changed and will continue to do so, the end.' I am not blaming them, there is no support available, but there should be, there has to be and if I have anything to do with it there will be. It's not easy asking for help, but that is what I am doing. Please help me get to my target- or even smash it and think of any other ways I can continue to raise money for <a href="http://www.thrombosis-charity.org.uk/" target="_blank">Lifeblood The Thrombosis Charity</a>- with me they will implement support for those affected by thrombosis, and though prevention is key, if you are faced with new challenges due to Thrombosis, you won't do it alone and support will be available.<br />
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Help me, help you, help others, help themselves</div>
Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-10336350802786259762013-05-10T11:03:00.000-07:002013-05-10T11:03:36.374-07:00National Thrombosis Week Day 5- 8km Done!Just got back from nannying and am feeling utterly exhausted- Day 5 done!<br />
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Its been a busy week of nannying, teaching, placement meetings, college and of course raising money for <a href="http://www.thrombosis-charity.org.uk/" target="_blank">Lifeblood</a><br />
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I decided to challenge myself to swim 8km thats 400 lengths and bake cakes and delivery them to lovely donators.<br />
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Well I have done it! I have a couple more orders for cakes and can take a few more so if you want some cakes download an order form from my <a href="http://www.justgiving.com/katherineelizabeth" target="_blank">justgiving page</a>- I will also be announcing the winning of the raffle to win a 13" uber cake tomorrow exciting stuff!<br />
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I can't believe that two years ago I was in a wheelchair and now I've just swam 400 lengths! I still remember first starting hydrotherapy and my exercises in the pool with James, then working my way up to 1 length then 5, then 12, then watching videojug swimming tutorials to learn to swim properly and now well- I can't even believe that was me!<br />
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Now it is time to rest, relax and hopefully reach my target of £1250.<br />
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If you can help in anyway I and Lifeblood would be so grateful.<br />
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www.justgiving.com/katherineelizabeth<br />
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<br />Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-3970004518466824672013-05-07T03:40:00.000-07:002013-05-07T03:40:08.051-07:00DAY 2 NATIONAL THROMBOSIS AWARENESS WEEK 2013So I have just got back from the pool after completing another 100 lengths!!! I have now done 200 lengths (4km) and am half way to hitting my 8km target. In a mo I am heading to the kitchen to start baking some more cakes for the bakeoff part of my fundraising and am really hoping that with your help I will be able to hit target and raise £1250 for <a href="http://www.thrombosis-charity.org,uk" target="_blank">Lifeblood:The Thrombosis Charity</a>.<br />
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While I was swimming my last 20 or so lengths I started to think about how far I have come over the last two years. Today is the Wedding Anniversary of the lovely Bill & Emma Pragnell and I remember being at their Wedding in my wheelchair, a lot heavy than I am today and still finding it hard to breathe. I look at the picture below and I can't even really acknowledge that it is me.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU9xGBKyUKiy1NmanbwPZ2Yl1a4Rx5K31lKcztdy0G1lCwqxQHOZBMHfxu9WuiaXc9CSvmkeuq6HeTBf8wjIQkEbERyH1fdvbc3-_9FGKoU0Gxgn1xvxMS_CgLF6JJaQnw0Opt_VZ_-m0/s1600/P5070018.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjU9xGBKyUKiy1NmanbwPZ2Yl1a4Rx5K31lKcztdy0G1lCwqxQHOZBMHfxu9WuiaXc9CSvmkeuq6HeTBf8wjIQkEbERyH1fdvbc3-_9FGKoU0Gxgn1xvxMS_CgLF6JJaQnw0Opt_VZ_-m0/s1600/P5070018.jpg" height="256" width="320" /></a></div>
My journey over the last two years has been pretty up and down- first the reality of having a DVT and multiple PE's, not being able to breathe, still trying to recover from knee surgery, not being able to dress myself, have a shower, make myself a drink/food or really do anything without feeling like I'm going to pass out. The reality of all that and how it impacts your independence, not being able to work, having to move in with my partner came with its positive and negative qualities. Then beginning to understand my limitations, going back to work a bit, then a bit more, feeling more positive about it all then being hit by the news I have Post Thrombotic Syndrome and that this will never go away. Of course there are good days and bad days but suddenly the realisation that this is a permanent condition. Surgical stockings will always have to be worn, blood thinning injections taken when flying and really trying to to tune in and listen to what my body is saying on a daily basis.<br />
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It is been an emotional journey too, fear, anxiety, anger, childish 'its not fair' moments. After getting myself as 'better' as I could I have really been focussing on the support and well lack of support to those affected by thrombosis, hence the blog Thrombosis Support. This month marked a turning point for that quest and journey as I had previously felt so alone and unable to do anything. A great meeting with the Lifeblood trustees enlightened me to the red tape surrounding anything like this, that I had already begun to discover, but also I saw a group of people who were behind me, and could give me the platform and support needed to make something happen. I am more determine than ever now to raise money for Lifeblood, to give my time and ideas and use my training in psychotherapy and the colleagues I am meeting to really give something back and let people know they are not alone.<br />
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This is me today;<br />
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a little tired maybe, but happy and hopeful that things can and will get better, and that sometimes it is time to stop blaming & moaning and start making things happen. Please if this touches you in anyway and you feel you may be able to help go to my page www.justgiving.com/katherineelizabeth</div>
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You can check out my video diaries here:</div>
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Have a fabulous day and thanks for reading!</div>
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Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-21625819460546788352013-04-30T06:35:00.002-07:002013-04-30T06:35:45.054-07:00Thrombosis Support & Lifeblood..... a match made in heaven?So tomorrow I have a meeting with Lifeblood:The Thrombosis Charity trustees to put forward my Thrombosis Support idea and how we can work together, and convince them to do so hopefully!<br />
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As many of you know this blog was set up not only for me to have a little moan about how thrombosis has affected me and my daily dealings with it, but also because I am passionate about creating a support network for those affected by thrombosis. It is one thing to moan about what isn't in place and what is needed, and quite another to actually get off your backside and do something about it- that is what I am trying to do.<br />
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I have had big ideas, and high hopes of what Thrombosis Support can be and visions of advertising campaigns in the future and national races in aid of it, and then often feel slightly deflated when I realise I am just one person trying to make something happen. That is one of the reasons that I want to work with Lifeblood, under their umbrella as it where. They are an established charity with I feel a hole, support, that needs to be fronted and filled- I think that is where my ideas come in. I did not realise just how much red tape there is around setting up a charity and I certainly do not often have the patience with form filling in, I think together we can really help others and make a difference. Also one of things I have noticed is that a lot of the fundraising for Lifeblood is done by those who have been affected by Thrombosis, be that have had an episode themselves, know someone who has been or who has sadly lost a loved one. I think to continue the support Lifeblood so desperately needs from the public there needs to be something in place for them, (not to belittle what Lifeblood already do as that is brilliant a too needed). A support network where they can interact on a number of different levels with people who know what they are going through, where they can offer each other coping methods, advice, support, compassion and friendship. I go from my own experience, I desperately wanted to communicate with someone who understood the emotional side of my thrombosis, and the continuing effects. I remember my consultant writing in a report regarding my PTS and compression stockings that "the patient should wear full length compression stockings from first thing in the morning till last thing at night, even when on holiday and in a hot climate, though a little discomfort may be felt she will soon get used to it." I really wanted to call him and say "you try wearing them all day in a hot climate!" cheek I thought you have no idea. I needed humility and reality about how my life was now going to be. I really hope that that is what I can offer.<br />
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The meeting is tomorrow- if any of you have anything you would like me to say from your personal opinion of what is needed, please let me know.<br />
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Thanks for reading and if you're able to please help me raise money for Lifeblood The Thrombosis Charity please go to my page and lets hope that Thrombosis Support can become one of their new initiatives!<br />
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www.justgiving.com/katherineelizabeth<br />
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Help me, help others, help themselvesAnonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-13465812520387170342013-04-20T09:07:00.000-07:002013-04-28T15:23:33.685-07:00National Thrombosis Awareness Week 6th-10th May Swimathon Bakeoff!So I started the day with a swim and then dropped off a batch of cakes to my friend for her birthday- felt like a national thrombosis awareness week fundraising dummy run!<br />
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I will be swimming 8km thats 400 lengths and taking 32 orders for cakes.<br />
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Maybe you have a birthday coming up and fancy a cake, perhaps it would be the perfect treat for all of your work colleagues or maybe you just like eating cake and this is the perfect excuse!<br />
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Order forms can be downloaded <a href="https://www.dropbox.com/s/ntvvyoak0bqhqed/ThrombosisSupport_CakeOrderForm_201304_v1.xls" target="_blank">here</a><br />
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If you don't fancy any cakes and just want to sponsor me for swimming check out my page:<br />
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www.justgiving.com/katherineelizabeth<br />
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Thank you<br />
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Also I will be doing a raffle!<br />
Tickets cost £1 per ticket £5 a strip, buy for you chance to win a 13" uber cake!!!<br />
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x<br />
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<br />Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-22902880556683633582013-04-17T04:47:00.001-07:002013-04-17T04:47:13.683-07:00National Thrombosis Week 2013 6th-10th May After the success of last year I am getting myself geared up for this years National Thrombosis Week. I was blown away last year by the generosity and was able to raise over £1000 for <a href="http://www.thrombosis-charity.org.uk/index.php">Lifeblood</a> and £200 for Thrombosis Support, I am hoping to smash that target this year!.<br />
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With that in mind, not only am I going to do something to push my body, I am going to something nice for all of you!<br />
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Some of you may now I am partial to a little bit of baking, and will be baking a number of different cakes and breads for you to purchase- I will give a guide price but hey its charity so if you want to purchase them for more I would happy for you to do so!<br />
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Here are a sample of some cakes I have previously made:<br />
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Details of my fundraising page can be found at :<br />
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http://www.justgiving.com/katherineelizabethAnonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-33867995985607478672013-01-20T10:38:00.002-08:002013-01-20T10:38:51.879-08:00It does not matter how slowly you go as long as you do not stop......<div dir="ltr" style="text-align: left;" trbidi="on">
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">So its been a while since I posted a blog and really since anything else has happened with Thrombosis Support- but as the title of this post suggests, it isn't that it isn't moving forward, it is, it's just I really want this project to work and therefore thinking and taking the time is key.</span><div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">The end of last year was one of acceptance and not exactly the easiest. As you may know from reading some of my other posts, I was diagnosed with DVT and PE's and now Post Thrombotic Syndrome following surgery where I was not given the blood thinning medication I needed nor any information about the risks of thrombosis, a case is open against the hospital in relation to this.</span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">One of the conditions of acceptance of liability from the hospital was to see<a href="http://www.bmihealthcare.co.uk/consultant/consultantdetails?p_name=Trevor-Paes&p_id=39807"> Mr Paes</a> a top vascular consultant. I was pleased to see him, to be given the opportunity to see a top consultant in this field filled me with hope, I thought if I was able to see the best he would be able to give me the answers I wanted to hear, to tell me what the cure was, what I could do, what others could do to make all this go away and for me to go back to living the normal life that I did before without any restrictions. I didn't get that. He was very frank with me, and he was able to fully explain what my condition was and for that I was grateful to have the time to ask questions and to be given the truth. He told me my condition is permanent and that I should stop searching for cures. He told me as the damage was in a deep vein that there was nothing that they could do. He told of research in europe where surgeons tried to fix a damaged valve, only to cause a further DVT, and we know the potentially life threatening complications that can come with that. He told me that it was like an incurable cancer and I needed to learn to live with it and not let it get me down. All very sane, frank advice, but all a bit much to take in and on board.</span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Those of you reading this who know me, know that I do not dwell on things and no matter what knocks I have had I have always tried to get back up. I had been trying so hard previously to be positive I was not accepting that this was is, when people asked me how my leg was I'd always reply that things were getting better, if anything to alleviate their discomfort of the situation. But I couldn't run away from it anymore, here was a man who has spent years researching into venus thrombosis conditions telling me that there is no hope.</span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">Now don't get me wrong I am okay, and I am not trying to seem over dramatic here as generally I know I can lead a pretty normal life, but I felt his words take the wind out of my sails and a need to really take in and accept what had been said, my mask of false hope was removed, this was it.</span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">What I think I have found most difficult is the feeling that I am carrying around a ticking bomb. I have Post Thrombotic Syndrome, I have two genetic blood clotting disorders that make me more prone to clotting, I have had DVT and Multiple PE's. My leg swells up if I stand or sit for too long and if I don't do something to stop that swelling to drain that blood I am at risk of clotting again. I wondered is this what I'm going to die of? Will I eventually have a careless day where this just takes over. I expect we all have things happening in our body that if we don't take care could kill us but is knowing and feeling it a good thing?</span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">The reaction of others can be tough too. "Will you always have to keep you leg elevated?", "Oh thats awful but it will go away right?" "I don't believe thats true things will get better."</span></div>
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<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">I think sometimes it is because people don't know what to say or they don't want to believe it and I feel like I need to say it is all going to go away to save them but it won't. </span></div>
<div>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></div>
<div>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">If I have learnt anything this last year it is that to truly be able to move on we must have acceptance. Maybe one day in my life time something will be able to be done, but for now I need to accept that this is my life. That I am unable to travel too long on a train, to sit in a cinema without taking a stool, to stand for long than a couple of minutes, to work in an office, in a shop, in a restaurant, to sit at dinner without having my leg up. That when I get married I may need to have a stool so I can put my leg up while I say my vows (it'll certainly be memorable!) But having said that I am still here, I could have not been and there is so much that I CAN do.</span></div>
<div>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;"><br /></span></div>
<div>
<span class="Apple-style-span" style="font-family: Georgia, 'Times New Roman', serif;">My next stage with Thrombosis Support is writing to two local hospitals and my MP to get the support groups set up. I am lucky that I have an amazing man who I can speak to about all these thoughts, a therapist and a great group of peers at college (I'm training to be a therapist). But so many people don't have that. When I went in to have knee surgery I was a healthy independent young woman with a bit of a gamy leg. Fast forward two and a bit years and everything has changed. I needed that support group, I still need it. I have good days and bad, living with a chronic illness can be debilitating, and from the stories so many of you have shared Thrombosis can have such a huge impact on life, it can take it away mercilessly and fast with no explanation leaving grief stricken loved ones. We all have times when we need support and I want to be able to provide that. </span></div>
<div style="text-align: left;">
</div>
<div style="text-align: center;">
<span class="Apple-style-span" style="color: red; font-family: Georgia, 'Times New Roman', serif;"><br /></span></div>
<span class="Apple-style-span" style="color: red; font-family: Georgia, 'Times New Roman', serif;">HELP ME, HELP YOU, HELP OTHERS HELP THEMSELVES</span><br />
<div style="text-align: left;">
<span class="Apple-style-span" style="color: red; font-family: Georgia, 'Times New Roman', serif;"><br /></span></div>
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<span class="Apple-style-span" style="color: red; font-family: Georgia, 'Times New Roman', serif;"><br /></span></div>
</div>
Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com2tag:blogger.com,1999:blog-1788025587636393082.post-58386879090191317302012-07-11T10:52:00.000-07:002012-07-11T10:52:03.672-07:00Meetings and bank accounts & charity gigs!<div dir="ltr" style="text-align: left;" trbidi="on">
So I have been busy meeting with people and putting the wheels in motion for Thrombosis Support.<br />
<br />
I am very excited to announce that the Thrombosis Support Bank Account is nearly up and running, just need the ID of the signatory's approved and then we are good to go- I have already raised nearly £200 for Thrombosis Support which is amazing and soon once we are all registered with HMRC I will have our Just Giving page up and running and then anyone can fundraise!<br />
<br />
The £200 already raised is going to go towards setting up the website, the forum and the start of the support groups.<br />
<br />
Thrombosis Support is here to support and help those affected by Thrombosis be it themselves or a loved one so I am very keen to get input from you about what you want Thrombosis Support to be.<br />
<br />
I will be looking for people to be trustees and to be involved in Thrombosis Support so please contact me via our <a href="https://www.facebook.com/groups/290342041055297/">facebook group </a>or leave a comment on the blog if you want to be involved.<br />
<br />
I had a very useful meeting with Allan Pimentel a Psychotherapist and Deputy Director at <a href="http://www.ccpe.org.uk/staff.html">CCPE</a> about setting up Support Groups, he gave me lots of information about the effectiveness of support groups and how to format them etc. Next stop is meeting with the local hospitals and I am in the process of creating a questionnaire that I want to be readily available for patients at their anti-coag clinic regarding after care and again trying to find out what those affected by thrombosis need and want in the way of support. I know I felt very alienated when I first was diagnosed and needed support and guidance.<br />
<br />
Next on the agenda is a Charity Gig, performing is my first love and I am blessed to know some very talented people, so watch this space for info regarding this.<br />
<br />
<span class="Apple-style-span" style="color: #313131; font-family: Verdana, Geneva, sans-serif; font-size: 15px; line-height: 20px;"><br />Help me, help you, help others, help themselves</span></div>Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-29207220550035283052012-07-11T10:16:00.002-07:002012-07-11T10:16:57.897-07:00DWP appeal......done!<div dir="ltr" style="text-align: left;" trbidi="on">
So it has been a busy couple of weeks with some very positive outcomes and lots of things happening.<br />
<br />
As I have vented a little previously since having a thrombosis, I have really struggled to get any support from the Department of Work and Pensions. In January of this year I began to try to go back to work, I love working, I am a workaholic and rarely have just one job, so not being able to work due to the DVT & Pulmonary Embolisms was killing me. I live with Post Thrombotic Syndrome and while I have to be careful and I do have limited capability I will not let it stop me from working and getting on with me life. Anyway January this year I started back at work, in the second week I ended up back in hospital- I tried to do two 8 hour days at a desk, leg slightly elevated but it was to static, my leg was so swollen and painful it took two days for the swelling to go down. I had tests in the hospital as they suspected another DVT, but thankfully it was just swelling due to PTS. I reduced my hours and kept trying. In February the DWP requested I go for a ATOS work assessment, to assess my capability for work and my eligibility for Employment Support Allowance. Since my surgery and subsequent DVT, PE's and now PTS I had received no help , no support. Prior to this I worked I paid tax and national insurance, INSURANCE, which I thought was for when due to no fault of your own you couldn't work full time. The assessment was a joke, I was told I did not have limited capability for work and was entitled to nothing, did they not know me? If I could work full-time I would, I was really trying to get my life back on track and just wanted some support, some help, not only where they not helping me, but they didn't believe me- what did they want, for me to stand there and then they could watch my leg change colour and swell up!?<br />
<br />
And so began the fight, the letters to the DWP appealing, letters and meetings with my GP, my physio, my employer, my consultant- I had to pay for letters that provided evidence of my condition, even though I have a medical certificate that states I can work only part-time and with limitations. In April I increased my hours and again in June. According to the DWP you are entitled to Employment Support Allowance if you have limited capability for work due to disability or illness and can work up to 16 permitted hours. As of June, I am now working more than the 16 hours permitted hours. Frankly I think this system stinks, when you are gradually trying to get back to work you can't go from 16 hours to full-time, I think it should work on a tiered scale, work up to 16 hours get x amount up to 20 get x amount up to 30 x amount and then above nothing or something like that- but it doesn't.<br />
<br />
Along the way I have kept the DWP informed of my condition, of my working hours and have asked on numerous occasions if there was any other help I was entitled to, or could apply for, I got no information. My case was going to tribunal. I have been struggling but getting by, on so many occasions I thought of giving up, and just getting on with it, but I just couldn't let it go, it felt so unjust, how can they even comment on my condition without understanding it? they don't live it, they don't have to sit with their elevated, they don't get pain from a simply train or car journey, from sitting down or standing still for more than 5 minutes. So I kept fighting and I am glad I did.<br />
<br />
On the 7th July at 3pm I had my tribunal hearing at Bexleyheath Tribunal & Courts office. Honestly I was really nervous, I knew I was totally in the right, I had been honest about my condition and how much I could and had been working, I had all the evidence, but I still felt sick in my stomach. I was glad it was coming to a head though, the fighting, the constant letter writing would after the hearing be over. I went into a room with a Judge, a Doctor and a Clerk. There was nobody from the DWP there, good I thought. They had all my evidence, the Doctor asked me a couple of questions regarding my condition, and my limited capabilities, then asked me to leave the room for 5 mins. I came back and there was a letter on the desk, they told me they had made their decision and that they would write to the DWP. I took the letter and left. The letter read:<br />
<br />
<b>The Appeal is allowed</b><br />
<b>Miss Johnson has limited capability for work</b><br />
<b>Total 15 points meets the threshold for an award of ESA</b><br />
<b><br /></b><br />
<b><br /></b><br />
I smiled the biggest smile I have smiled in a long time, they believed me and I was right, I don't think I have ever felt happy that I have limited capability for work, when I first got the medical certificate from my Doctor telling me I had a permanent condition my heart sank, whereas on this appeal notice, I felt accepted, recognised, visible. I left feeling a sense of satisfaction, I went home read the small print and the DWP doesn't have to pay me any back dated benefit. I am contested 3 months of ESA, I really don't think they will not pay up, I certainly hope not, but anyway I won my appeal and that is what matters.<br />
<br />
<br />
<br />
<br />
<br /></div>Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-58667697399789056062012-06-13T04:54:00.002-07:002012-06-13T04:56:42.076-07:00Let's get things back on track.......<div dir="ltr" style="text-align: left;" trbidi="on">
So, it has been a while since I have posted anything, the last couple of weeks have been crazy busy.<br />
<br />
I finished the 31km for Lifeblood and after it was pretty exhausted, thank you to everyone who has donated so far, I smashed my target for <a href="http://www.thrombosis-charity.org.uk/">Lifeblood</a> and have raised £1070- let's hope it continues.<br />
<br />
I then was able to tread the boards again. Prior to my knee surgery and subsequent VTE episodes I performed on the stage and this was something I didn't really think I would be able to do again- I performed in the Come Dancing Concert at the <a href="http://www.stratfordeast.com/">Theatre Royal Stratford East</a>, it was great to be doing what I love again, I apologise to all those in the cast, especially in the girls dressing room who had to deal with me sat on the floor in the interval and between shows with my leg shoved in the air trying to drain the blood! My post thrombotic syndrome was hurting but it was certainly worth it and I was sensible after the show and kept active and my leg elevated. The post- show blues has just about subsided and I am able now to focus again on Thrombosis Support and what I want to do moving forward.<br />
<br />
I have been lucky enough that alongside my fundraising for Lifeblood I have been able to raise a little money for Thrombosis Support, which will help greatly towards setting up the website, forum and local support groups- you can also donate on this blog if you feel able to and I must say a big thankyou to Sonya Raymond for her generous donation today.<br />
<br />
As I have previously said I want Thrombosis Support to be for those affected by Thrombosis and so welcome any input. My aim is to provide support, via the web, forums, information, local support groups, support grants etc. to those affected by Thrombosis, it changes lives, and unfortunately takes away lives and I know that there is a need and want to offer support.<br />
<br />
If you have any ideas, thoughts, wants, needs related to this please contact me either leave a comment on the blog or request to join the <a href="https://www.facebook.com/groups/290342041055297">Thrombosis Support Facebook Group</a><br />
<br />
My next few tasks are the forum, website and contacting local hospitals about setting up support groups via the anti-coag clinics- I shall report back on my progress.<br />
<br />
Thanks for reading!<br />
<br />
Help me, help you, help others, help themselves</div>Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-66838561839616769072012-05-16T03:43:00.003-07:002012-05-16T03:43:41.069-07:00Final Video blog showing my journey to 31km!<div dir="ltr" style="text-align: left;" trbidi="on">
<div class="separator" style="clear: both; text-align: center;">
<iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/lS4IdajGJG8?feature=player_embedded' frameborder='0'></iframe></div>
</div>Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-71663924168355568712012-05-11T15:09:00.001-07:002012-05-11T15:09:07.382-07:00Day 5 Fundraising done!<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">So I have done it- I have completed 31km in 5 days for Lifeblood, the Thrombosis Charity.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I am so pleased to have done it, I am super tired. Here's how I did it:</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Monday</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Cycling 6km</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Running 1km</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Swimming 1km</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Total 8km</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Tuesday</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Cycling 5km</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Running 1km</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Total 6km</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Wednesday</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Cycling 5km</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Running 1km</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Total 6km</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Thursday</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Cycling 5km</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Running 1km</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Swimming 1km</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Total 7km</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Friday</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Cycling 3km</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Running 1km</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Total 4km</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I am off tomorrow to Kefalonia for a long weekend break to see my cousin, a well deserved rest I think. When I get back I am going to edit together my video blogs into one to show my journey and try to get some more sponsorship. Thank you to all those who have sponsored me so far.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">If you are able to give anything, even just a £1 please please go to my page, www.justgiving.com/johnsonkatherineelizabeth.</span><br />
<br />
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<br />Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-85607667089794627812012-05-10T15:40:00.002-07:002012-05-10T15:40:14.098-07:00Day 4 27km done! me swimming & everything!<div class="separator" style="clear: both; text-align: center;">
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<br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">So it is the end of day 4, and I have covered 27km of my target 31km in 5days for National Thrombosis Week, for <a href="http://www.thrombosis-charity.org.uk/">Lifeblood</a>.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Today I have been overwhelmed by the generosity of people, people who I have never met, who don't know me, he know me only as James' partner. Thankyou, Thankyou, Thankyou. The money you are donating will help Lifeblood to continue to do the amazing work raising awareness of Thrombosis. This is just the beginning for me, I am so proud that I have been able to achieve this, I know I haven't finished yet, but I also know that I will. When I was in the hospital, when I was in the wheelchair I never imagined that I would be able to cycle, run, swim, so that I am doing it one year on is amazing.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I am going to be setting up Thrombosis Support, an organization that works primarily to support those affected by Thrombosis, emotionally, factually and financially. That is the next project, there will I am sure be more fundraising to come for that, and I have certainly proved this week that I am able to do something. I have set up a support my blog tab, at the top of this blog, if you are able to give something, I would be most grateful. The next step for Thrombosis Support is the website & forum and this costs. </span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Please help me, help you, help others, help me</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Thanks for reading</span>Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-61109592295810112822012-05-09T04:02:00.000-07:002012-05-09T04:02:11.632-07:00Day 3- Tired, but still powering through<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">So I have just got back from the gym, and I have done 6km today so am still on target for my 31km in 5 day challenge.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Whilst in the gym I was doing my strength exercises,stretching and listening to Jessie J 'Big White Room', it brought back lots of memories of being in hospital, of laying in the hospital bed in so much pain, not being able to breathe, not being able to walk, not being able to be me.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I have come on so far from those days, and I can't even believe it was me, it feels so unreal. For any of you who know me, and saw me in that hospital bed, or pushed me in my wheelchair, who helped me try to begin to walk again, who have been the support for my leg when I have needed to elevate it, look at where I am now, please help me to give back to Lifeblood so this doesn't happen to someone else. DVT's & PE's are preventable and treatable, I am lucky I am sill here, so many people don't get that chance. For those of you who don't know me, and are reading this blog, firstly thankyou. I am just one person trying to give something back. This week is raising money for Lifeblood, moving forward I want give support to those affected by thrombosis. If you have been affected by thrombosis please contact me, tell me your story, tell me what you need, what you think will help. I am full of ideas, and I want to make these a reality.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Help me, help you, help others, help me..................</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span>Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-5466578569353992882012-05-08T14:55:00.001-07:002012-05-08T14:59:00.110-07:00NTW- Day Two Fundraising<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">So it is 22:40 I have recently got in from teaching and it is safe to say I am knackered! I started off my day in the gym and did 5km cycling & 1km running, so I have done my goal of 6km today horray!! In total I have done 14km of my 31km target, which isn't bad on only day two. After my gym session I was in the office for a bit then headed home for some food, and leg rest before going to teaching. I was sat with my older class today and told them briefly about what I am doing and about what has happened to me in the last year and half, their faces really showed the enormity of it. These children are between 15 & 18, and I don't think any of them knew about thrombosis, what it was, how it can kill you and how quickly it can come on. I wasn't trying to scare them, and I think they know that, it is just about awareness, we spoke about Lifeblood's latest campaign and it felt good that I was able to have a really honest conversation with these children and hopefully they will take that on and maybe tell others. I personally think the next challenge is making young people more aware of thrombosis. For so long it has been seen as something you get if your old and can't move, or if you go on planes alot. It isn't, anyone can get a bloodclot, healthy, active, young, old, anyone, and people need to be more aware of it, and to stop it, and if it happens, to treat it and keep going!</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Please, please go to my page <a href="http://www.justgiving.com/johnsonkatherineelizabeth">www.justgiving.com/johnsonkatherineelizabeth</a> and give something, anything, whatever you can. </span></div>
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Right tomorrow at least 6km!</span><br />
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<br /></div>Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-35813750453026282782012-05-07T13:29:00.004-07:002012-05-07T13:32:26.688-07:00National Thrombosis Week- Fundraising Day 1- done!<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">So I have done it, I have completed day one of my fundraising for Lifeblood, I covered 8km today so am just over 25% of the way there to my goal of 31km in 5 days. It is safe to say I am pretty knackered, however on a positive note my leg is feeling pretty good. This morning the PTS was really bad and my leg had swollen up by the time I got out of bed went to the toilet and went to the kitchen, however it is now feeling much better after a day with quite a lot of exercising, so thats good.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I feel really positive that I am starting my fundraising for Lifeblood, and even though I ultimately want to start my own charity, I am so grateful for everything Lifeblood does and it feels good to be able to give back. I only hope that in 10 years time when the Thrombosis Support Charity is working to support those affected by Thrombosis, I am able to thank people for fundraising for me, and that the charity is able to help those in need. </span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Thankyou again for reading my blog, please pass it on, go to www.justgiving.com/johnsonkatherineelizabeth and give whatever you can.</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Have a fab evening</span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">x</span><br />
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<br />Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-4960585414998400922012-05-07T11:16:00.004-07:002012-05-07T11:16:52.724-07:00Fundraising Day 1<div class="separator" style="clear: both; text-align: center;">
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<br />Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0tag:blogger.com,1999:blog-1788025587636393082.post-2795098437137500462012-05-07T07:24:00.001-07:002012-05-07T07:24:16.645-07:00National Thrombosis Awareness Week- Day 1So it's day one of my fundraising & oh what a busy day it's been- I've been tackling iMovie trying to make a fundraising clip & hopefully I can upload it later. I got to the gym & managed 6km on the bike & 1 km running, quite impressive for me, especially as this time last year I was in a wheelchair- I am hoping to to 1km swimming later. Check out my video and my page www.justgiving.com/johnsonkatherineelizabeth<br />
Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0London London51.455665 -0.003649tag:blogger.com,1999:blog-1788025587636393082.post-35912893902137687182012-05-05T05:00:00.001-07:002012-05-05T05:00:08.152-07:00What's it all about anyway??<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">So I felt like I wanted to really put it out there, what this blog, the subsequent forum and website, and my whole thinking behind Thrombosis Support is. I feel like I have been boring you all with the DWP saga, and whilst I will go back to it (YAWN) today is about other things.</span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I want to create a charity/organisation/whatever you want to call it, that works primarily to support those who have been affected by Thrombosis. You may have had a DVT, PE, have PTS, or you may have been diagnosed with a <span class="Apple-style-span" style="line-height: 19px;">Thrombophilia. You may have be one of the unlucky ones who has had a loved one taken from you due to thrombosis, or you may be someone who knows someone affected by thrombosis and want to help them, however you have been affected, I want Thrombosis Support to be able to help. </span></span><br />
<span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span><br />
<span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I first had thoughts of a need to set something up when I myself was struggling to find support, and really come to terms with what had happened to me. I had gone from being a relatively healthy young woman, to someone who was either in hospital or going to clinic every week, sometimes twice a week and well who was generally quite unwell. </span></span><br />
<span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span><br />
<span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">As I have said before when the thrombosis hit, it was like a wave crashing over me, and everything changed.</span></span><br />
<span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span><br />
<span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The first thing I have set up is this blog, thrombosis support, I thank you all for reading it, re-posting, re-tweeting, following & telling others about it, please please keep doing so. I will be using this blog to share my experiences with thrombosis, and also my ideas for the future of thrombosis support, I welcome your feedback & comments. I want thrombosis support to be what people affected by thrombosis need, so do get in touch and let your voice be heard. </span></span><br />
<span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span><br />
<span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The second thing is the Thrombosis Support Facebook group, search for it on facebook and get involved. </span></span><br />
<span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span><br />
<span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">The third thing I am working on is the Thrombosis Support forum, where people can chat with others about their experiences, gain some support from like minded people and be able to search through topics, as the issue they are having someone may have had before.</span></span><br />
<span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span><br />
<span class="Apple-style-span" style="font-family: Verdana, sans-serif; line-height: 19px;">The final thing is the website- fundamentally I want the website to be able have all things support. Information about what thrombosis is, information about how to get it tested, treatment. Information about if thrombosis does happen to you what to do next, how to deal with adjusting to everyday life, where you can purchase stockings, support aids. I would like to set up support groups which can be advertised on the website, be able to offer different types of therapy, advertise fundraising events, offer advise on what benefits you may be entitled to and offer support grants if you are struggle with the financially implications of having a thrombosis. The list goes on and I welcome any input from other suffers of what they would like Thrombosis Support to have. </span><br />
<span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span><br />
<span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">I am in the process of setting up Thrombosis Support as a non-profit organisation in order to be able to begin fundraising for it, because ultimately while I can do some of the above without funds, I need help to set this up. I know that there is a need and a want for a charity for thrombosis suffers and those affected by thrombosis, to support their life post thrombosis and make that adjustment a little easier. In the interim I have set up a donation tab on this blog where you can donate whatever you feel you can, I gratefully receive any help.</span></span><br />
<span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><br /></span></span><br />
<span class="Apple-style-span" style="line-height: 19px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">As many of us know there is one charity out there in the UK, dedicated to promoting awareness of thrombosis within the medical profession & publicly.<a href="http://www.thrombosis-charity.org.uk/">Lifeblood</a></span></span><br />
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<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span class="Apple-style-span" style="line-height: 19px;">When I first came out of hospital Lifeblood, where a tremendous help, they gave me information about my condition, and showed me that I wasn't alone. Anyone who wants more information about thrombosis awareness should go to their website.</span></span><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzmuXMfL6wYgmhgLFOZPv2MWlgRSywtsYKx3xJPRErepoSrrEPYx8avRHAEXr0NJwj754ykR7u3WUD051Gl7ayF1PwxtzzkctzEWXLrOfFG9MDiAxtm_p_Fr8FwVtqLYlp6CKj8XZ9EWg/s1600/11-5-9-img_ntw_11.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhzmuXMfL6wYgmhgLFOZPv2MWlgRSywtsYKx3xJPRErepoSrrEPYx8avRHAEXr0NJwj754ykR7u3WUD051Gl7ayF1PwxtzzkctzEWXLrOfFG9MDiAxtm_p_Fr8FwVtqLYlp6CKj8XZ9EWg/s320/11-5-9-img_ntw_11.jpg" width="265" /></a></div>
<span class="Apple-style-span" style="font-family: Verdana, sans-serif;"><span class="Apple-style-span" style="line-height: 19px;">I feel like I want to give back to lifeblood and as such am doing some fundraising for them in national thrombosis week. Please check out my just giving page for all the information:</span></span><br />
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<span class="Apple-style-span" style="color: #1c1c1c; font-family: arial, helvetica, sans-serif; font-size: 14px; line-height: 20px;"><a href="http://www.justgiving.com/johnsonkatherineelizabeth" id="frp-link" style="background-attachment: initial; background-clip: initial; background-color: transparent; background-image: initial; background-origin: initial; background-position: initial initial; background-repeat: initial initial; border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; clear: both; color: #538bc8; cursor: pointer; display: block; font-size: 14px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-decoration: underline; vertical-align: baseline; width: auto; word-wrap: break-word;" title="Go to my page">http://www.justgiving.com/johnsonkatherineelizabeth</a><a href="http://www.justgiving.com/johnsonkatherineelizabeth" id="frp-link" style="background-attachment: initial; background-clip: initial; background-color: transparent; background-image: initial; background-origin: initial; background-position: initial initial; background-repeat: initial initial; border-bottom-width: 0px; border-color: initial; border-left-width: 0px; border-right-width: 0px; border-style: initial; border-top-width: 0px; clear: both; color: #538bc8; cursor: pointer; display: block; font-size: 14px; margin-bottom: 0px; margin-left: 0px; margin-right: 0px; margin-top: 0px; outline-color: initial; outline-style: initial; outline-width: 0px; padding-bottom: 0px; padding-left: 0px; padding-right: 0px; padding-top: 0px; text-decoration: underline; vertical-align: baseline; width: auto; word-wrap: break-word;" title="Go to my page"><br /></a></span><br />
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<span class="Apple-style-span" style="line-height: 20px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">Right I think that is quite enough for now- thankyou again for reading and please spread the word.</span></span><br />
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<span class="Apple-style-span" style="line-height: 20px;"><span class="Apple-style-span" style="font-family: Verdana, sans-serif;">xx</span></span><br />
<span class="Apple-style-span" style="font-family: sans-serif; font-size: 13px; line-height: 19px;"><br /></span>Anonymoushttp://www.blogger.com/profile/16387267186221455900noreply@blogger.com0