tag:blogger.com,1999:blog-44233184682764390052024-03-05T11:03:33.686+00:00Funny BloodLife as a woman bleederRoshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.comBlogger102125tag:blogger.com,1999:blog-4423318468276439005.post-15028104742257087942019-07-12T13:01:00.002+00:002019-07-12T13:04:33.001+00:00New Funny Bleeder Blog<span style="font-family: "verdana" , sans-serif; font-size: large;"><br /></span>
<span style="font-family: "verdana" , sans-serif; font-size: large;">Earlier this year I swapped from this Blogger site to WordPress. It's a much better looking interface in my opinion and easier for the writer to use.</span><br />
<span style="font-family: "verdana" , sans-serif; font-size: large;"><br />You can find my new site here:<br /><a href="https://funnybleeder.blog/">https://funnybleeder.blog/</a></span><br />
<span style="font-family: "verdana" , sans-serif; font-size: large;"><a href="https://funnybleeder.blog/"><br /></a>If you've found your way here via mum's book, Funny Blood, you will find all my articles printed in the book from this blog, along with the more recent ones on my Funny Bleeder website.</span><br />
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<span style="font-family: "verdana" , sans-serif; font-size: large;">If you're a regular popper in, thank you for bearing with me. I have had a few more moments of inspiration, which can be found on the new WordPress <a href="https://funnybleeder.blog/" target="_blank">blog</a> :)</span><br />
<span style="font-family: "verdana" , sans-serif; font-size: large;"><br />Cheers me dears xxx</span><br />
<span style="font-family: "verdana" , sans-serif; font-size: large;"><br /></span>Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com0tag:blogger.com,1999:blog-4423318468276439005.post-52572711355862007182015-03-24T15:45:00.000+00:002015-03-24T15:45:46.493+00:00Penrose promises ...<div style="-webkit-composition-fill-color: rgba(130, 98, 83, 0.0980392); color: rgba(0, 0, 0, 0.701961); font-family: UICTFontTextStyleBody; font-size: 17px; text-decoration: -webkit-letterpress;">
<span style="background-color: rgba(255, 255, 255, 0);">Next week is a milestone in the history of the contaminated blood campaign. It is the publication of the final report from 7 years of hard work put into the Scottish Public Inquiry into Hepatitis C/HIV acquired infection, from NHS treatment in Scotland with blood and blood products.</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><br /><a href="http://www.penroseinquiry.org.uk/" target="_blank">http://www.penroseinquiry.org.uk</a></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><br />What does this mean?</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><br />Good question. This is the first and only <i><b>public</b></i> inquiry that has been conducted into a scandal that has been continuously whitewashed by previous UK administrations. This is the first time that comprehensive investigation and examination of the facts surrounding thousands of people being exposed to contaminated blood has taken place. Other than by campaigners themselves of course and Lord Archer's private inquiry. Lord Penrose has taken evidence from those directly affected or their surviving families. He has had the power to call those involved in decision making to give evidence. His scope has been limited to the events and victims in Scotland but any recommendations made and all lessons and implications for the future that are identified, will have national ramifications.</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><br />We have reached milestones before. The Lord Archer private inquiry. Pittances offered and inadequate schemes set up. Debates and votes in the House of Commons. Reviews of current arrangements announced. This has been an incredibly difficult journey with many obstacles. Many of my friends and fellow bleeders didn't make it. They fell by the wayside, in some cases many years ago, in some cases within the last month; still they fall and the journey isn't over.</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><br />What I hope is that this is the <i>final</i> milestone, that this leads us into the last lap and then it will be over. Tomorrow won't be the end because Lord Penrose can't force action, only make recommendations, but I deeply hope that this is the commencement of the final act. One thing I truly want is to be able to stop fighting. To fight no more the authorities, the MPs that betrayed us, the organizations who supposedly represent us and sadly even the victims we are alongside as we are sometimes driven to by the depths of the despair within us. </span></div>
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<span style="background-color: rgba(255, 255, 255, 0);">I have to admit I'm scared. I am more optimistic about this than anything that has come before. I hate that it has taken so long but equally, that length of time gives me hope that the process has been incredibly thorough. I can't get over how many people have died during the course of this tragedy, how many have been at death's door and crawled their way back thanks to organ donations. You may not be aware but this is the 15th biggest disaster in terms of death toll in UK history.</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><a href="http://en.m.wikipedia.org/wiki/List_of_disasters_in_Great_Britain_and_Ireland_by_death_toll">http://en.m.wikipedia.org/wiki/List_of_disasters_in_Great_Britain_and_Ireland_by_death_toll</a></span></div>
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You may think by looking at me that I'm fine, that this hasn't really affected me. I'm afraid as the adage goes appearances can sneak up behind you, tap your left shoulder and smile a cheery hello, whilst pilfering the family jewels from your handbag. The terrible thing about this contamination is that once the indiscriminate, and in some cases discriminate infection took place, we as patients then faced a Russian roulette as to what happened next. We had no control over any outcome. Who survived, who died was pure chance and something we sleep with every night we survive. Yes, there were treatments but these caused massive problems in themselves and had no guarantees. Not only do we have this constant fear but our families do too. Imagine for one moment how you would feel if you had allowed a doctor to inject something into your child which turned out to be full of HIV or Hepatitis C. The guilt is almost unimaginable but this is what the families live with. If you survive while your friends and family don't, imagine what that does to your already compromised mental health. I may look fine but I've been unable to work fully since my Hepatitis C treatment because of the damage it did to my health, I was unable to have children because of the risk of infecting them, I dread the future and expect that one day these multiple viruses will take their toll as I've seen them do to many of my friends. </div>
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I contain the psychological trauma in the main and appear to be dealing with it. I <span style="background-color: rgba(255, 255, 255, 0);">even</span> convince myself that I am. Then something tiny will happen, I trap my finger in a clip lock box, I lose the nose pad from one side of my glasses and I cannot contain the eruption of emotion that follows. I swear, shout, hit things. I can't help it and asking me to calm down will only make it worse. Having flipped the nose pad off my glasses in mum's car as she dropped me at the station earlier today, I flipped. As the hail came down I searched in vain for it, then gave up and harangued the ticket machine as I collected my train tickets. I swore at it and hit it. Then once mum and dad had gone, the sympathetic look from a man who must have witnessed this outburst was enough to drop me deep into a well of sadness. I might've cried but it was raining too hard to know. </div>
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<span style="background-color: rgba(255, 255, 255, 0);">Please Lord Penrose lift this weight from our shoulders and hand us a towel. I long to be able to sit with my remaining friends, toast those who are no longer with us, and say we did it. We bloody did it.</span></div>
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Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com0tag:blogger.com,1999:blog-4423318468276439005.post-3805159311757505662014-04-27T10:34:00.000+00:002014-04-27T10:34:29.938+00:00Factor 9 - pledge now to take this play to the Edinburgh Fringe<div class="yiv9765988133" id="yui_3_13_0_1_1398594306977_2288" style="font-family: HelveticaNeue, 'Helvetica Neue', Helvetica, Arial, 'Lucida Grande', sans-serif; font-size: 16px;">
I am writing this post to ask for your help with the attempt to get an incredible piece of work shown at this year's Edinburgh Fringe Festival. </div>
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A playwright called Hamish MacDonald has written a play called Factor 9 based on the contaminated blood tragedy whereby thousands of haemophiliacs and those with other bleeding disorders were infected with contaminated blood products. The work is inspired by my friend Bruce Norval, a haemophiliac contaminated with hepatitis C, as I was. The play premiered in Sweden in March and has so far toured Scandinavia and Wales. </div>
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Below is feedback from an audience member:<br /><span id="yui_3_13_0_1_1398594306977_2299" style="color: #121a0d; font-family: 'Helvetica Neue', Helvetica, Arial, 'Liberation Sans', FreeSans, sans-serif; font-size: 12pt; line-height: 24px;">"<i>Two actors in front of a smart and really stylish set deliver a tumultuous story... They take us under the skin of two afflicted individuals. And their hunt for answers soon develops into a heartrending sort of crime story... Above all, Factor 9 deals with the intricate connection between cold medical research and economics that in the end reflects how we as society view our sick. And it is an horrific mirror image.</i>"</span><span class="yiv9765988133" style="font-size: 12pt;"> </span> </div>
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<span style="color: red;"><b>There is a Kickstarter campaign to fund putting the play on at the Edinburgh Fringe, and it has until the morning of Friday 9 May to raise £16,000 in pledges to take the play to the festival and get it and our campaign vital publicity. As of today a total of £13,865 has been pledged with 11 days to go and as we are so close to reaching the goal, I am appealing to you to help with the final push.</b></span></div>
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<span class="yiv9765988133" style="font-size: 12pt;">This link will give you more information and is where you pledge:</span></div>
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<a class="yiv9765988133" href="https://www.kickstarter.com/projects/1995513326/factor-9-how-could-this-disaster-happen?ref=live" rel="nofollow" style="color: #196ad4; margin: 0px; outline: none; padding: 0px;" target="_blank">Kickstarter - Factor 9</a></div>
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As you know the contaminated blood campaign has been on-going for many years with various anti-climactic moments along the way. The Penrose Inquiry is currently preparing to report: this is a Scottish government funded inquiry which has considered the subject from a Scottish perspective. A lot of our hopes are riding on this as a way to shame the UK government into acting - dependent on the results of course. The inquiry cannot unfortunately assign blame, nor can it enforce action but we are hoping that the evidence it has uncovered will go a long way to helping us achieve a final resolution. We wait and see. </div>
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Factor 9 was recently featured on Scottish TV News:</div>
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<a href="https://www.youtube.com/watch?v=t8ksNulN3Ys" rel="nofollow" style="color: #196ad4; margin: 0px; outline: none; padding: 0px;" target="_blank">STV News Aberdeen</a></div>
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Getting the play performed at Edinburgh will mean mainstream press coverage and raised awareness and this is perfect timing given the imminent Penrose Inquiry report. Any money you are able to pledge will not be collected until the total is reached. I have donated what I can and I am asking if you have any spare funds to help towards getting this play into the public eye, and you feel it is a worthy cause, please make a pledge asap. There is a minimum pledge of £1 and, as the saying goes, every little helps. </div>
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I personally would love to see this play, especially if it is on such a world stage as the Fringe.</div>
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Thank you to those who have already pledged. </div>
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Do ask, if you have any questions...</div>
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Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com1tag:blogger.com,1999:blog-4423318468276439005.post-41392721865437887762014-04-17T18:39:00.000+00:002014-04-17T18:42:32.643+00:00World Haemophilia Day 2014<h2>
<span style="color: red; font-family: Trebuchet MS, sans-serif; font-size: large;">Hello there and happy World Haemophilia Day!</span></h2>
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<span style="font-family: Trebuchet MS, sans-serif;">Whether you're a bleeder or a clotter you may be interested to see this video which I made last week of me having one of my regular clotting factor injections. As a severe bleeder with type 3 von Willebrand I learned to self-infuse factor 8 aged 14 (26 years ago now) and it revolutionised my life. I am lucky to find injecting relatively straightforward, most of the time.</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I was intending to re-record this today, wearing red, for World Haemophilia Day but instead I'm taking my dad out for a birthday lunch as he was 75 yesterday, so you're gonna see my trial run which I figure is good enough. Please bear with my efforts as it's the first video of myself I've ever attempted!</span><br />
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<span style="color: red; font-family: Trebuchet MS, sans-serif;">I wanted to record and post this to raise awareness of the thousands of women who live with bleeding disorders and also to reach the millions of undiagnosed to encourage anyone who thinks they might have a clotting problem to consult their doctor with a view to getting tested. </span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">Not everyone has to inject like I am doing, those who are </span><span style="font-family: 'Trebuchet MS', sans-serif;">severely </span><span style="font-family: 'Trebuchet MS', sans-serif;">affected do and you don't have to do it yourself. I chose to so I can take my treatment and travel / work anywhere. I am lucky enough to be able to do this and I appreciate that massively. Others in less affluent parts of the world do not have access to the most basic treatment. To find out more about that and how you can help please follow this link:</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><a href="http://www.saveonelife.net/" target="_blank">Save One Life</a></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I hope you enjoy (?) my video or at least find it interesting, and if you're a fellow bleeder or carer feel free to feedback on my technique or sanitary arrangements! </span><br />
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<span style="font-family: Trebuchet MS, sans-serif; text-align: center;"><a href="http://youtu.be/5L3azt02Cos" style="text-align: center;" target="_blank">Funny Blood Jab</a></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">I've tried to upload the video but blogger won't let me so I now have my first ever video on YouTube. Apologies the sound is a bit rubbish - I'm a novice! Thanks for watching ;)</span><br />
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<span style="font-family: Trebuchet MS, sans-serif;">xx</span><br />
<br />Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com2tag:blogger.com,1999:blog-4423318468276439005.post-89400265302943045822013-12-12T21:43:00.001+00:002013-12-12T21:43:21.913+00:00Latest letter to my MPI sent this letter to my MP this week and I thought you might like to read it too. It was based on a template letter put together by the Manor House, Contaminated Blood Campaign and Tainted blood groups, with my own input added. <br /><br />This is a critical time, it seems, in our long years of campaigning. Lord Penrose is due to report on the Scottish Public Inquiry in the spring next year and it seems support and momentum is swelling. <br /><br />I am not letting my hopes swell accordingly, though they are getting jumpy. I have had too many disappointments in the past to make assumptions that appropriate action will finally be taken. However you never know and I would love my cynicism to be proved inaccurate. I really would. <br /><br />"Dear Mr Garnier<br /><br />I am writing to update you on the important new developments concerning NHS contaminated blood/blood products. This is a crucial, and potentially historic time in which a resolution to the thirty-year campaign for justice may be possible and I appreciate your continued support in pursuit of this.<br /><br />Alistair Burt MP met with the Prime Minister on November 12th to review the unresolved issues and hear from some of those affected. I have attached his press release following on from that meeting. Feedback was provided to MPs at a meeting of the APPG for Haemophilia & Contaminated Blood on 20th November. <br /><br />The APPG heard there are significant developments taking place in a bid to bring about closure for all those affected. Described as a positive meeting, Mr Cameron committed to look at the issue and accepted that there are matters that need to be resolved. Two senior officials have been appointed by Mr Cameron to work with Mr Burt and other MPs on identifying a way forward. I have also attached the notes taken at that meeting for your information. I hope you are willing to get involved with this work.<br /><br />As you are already aware, this matter is of great importance to me. For over 20 years my family and I have been affected by what happened, and these effects are wide-reaching.<br /><br />I was fully intending in this section to outline the effects contaminated blood has had on my life however I am opting not to go into the minutiae at this point in time. I have always faced the challenges from my medical conditions head on and done my utmost to be positive and live life as best I could, even once infected by contaminated NHS blood products. I am often told I look well and those who know how deeply I've been affected by my infection with hepatitis C both physically and mentally are amazed by how well I cope. I'm going to let you into a secret. I'm not coping. I've found the last few years, since the last government announcement of "help" for the victims of contaminated blood, increasingly difficult. I have anger outbursts that are uncontrollable and frightening. They are usually triggered by my hurting myself in a minor way and result in a loss of control, a fury, and violence that severely upsets me. I asked for a referral to a psychologist last July. <br /><br />Eventually as that was not forthcoming I pursued this through another route and started seeing a psychotherapist in March of this year. I saw her for 6 months and she has now retired. I am now looking again for some support in this area. <br /><br />My problem is that I am psychologically at my limit. I have coped with the difficulties caused by my infection with hepatitis C and the subsequent toxic treatment of it. I have managed my feelings of depression and anger over the years. I have dealt with the feelings of utter disappointment where we have been let down by government after government. I live with the difficulties of my poor health and pain every day. Dwelling on this does me no good. I consider myself in a kind of limbo - unable to work, unable to have the family I so desire, unable to do any of the hobbies I love. Waiting for the day when I feel better and knowing that day is more than likely never going to come. And believe me I am a positive person who maintains my sense of hope wherever I can.<br /><br />We need to move into a bungalow due to my mobility needs. We cannot afford to. Our only realistic option for having a child is via surrogacy. We cannot afford this. If I had a child I would be unfit as a mother unless I had full-time support. We cannot afford this either. If and when I die my husband would be left with nothing because I am not accepted by any insurers for life insurance. When I am struggling and need psychological support I would like to be able to access this immediately rather than applying to a fund which takes weeks, if not months, to decide if they can help with funding for this. None of this would be a problem if I had not been infected with Hepatitis C, if I had not had two lots of toxic interferon treatment which has left me so ill I lost my lucrative career in IT consultancy. I would like this recognised and put right.<br /><br />I am dealing with the loss of so many things but mostly the loss of my own identity and my future. And please do not forget I am "cured" of hepatitis C in the eyes of the NHS and the government. <br /><br />I would like nothing better than to forget the hepatitis C. To forget that every day I struggle with the physical and mental effects of being given virus contaminated blood products. I doubt I will ever completely forget but I ask you to do your utmost to ensure that I and others in my position do not get forgotten again, but get the help and support we should have had many years ago.<br /><br />This is what I would like to happen:<br /><br />The Skipton / Caxton / MFT needs to be scrapped - they work ineffectively and with little understanding of the nature of the difficulties we are suffering. They could be made to be proactive and help in a much more comprehensive manner but I would prefer them become redundant.<br /><br />I suggest instead that those of us who received contaminated blood products - irrespective of how we are right now, but instead acknowledging the devastation of infection itself, and understanding and expecting that our problems will only increase in time - be given proper financial support. We cannot get mortgages, cannot get life insurance, do not have pensions, are unable to save. All of this could be solved by a substantial one-off payment and subsequent annual payments.<br /><br />I would suggest a reasonable and comprehensive support arrangement to be:<br /><br />~A lump sum ex gratia payment made on moral grounds to all patients infected by contaminated blood products or their widows / families (I'm not sure of the up to date figure) of £375,000 – this payment could be made over three years though it would be better received as a single lump sum. <br />~An annual ex gratia index linked payment made on moral grounds to all patients infected by contaminated blood products, to be paid whilst they are still alive (again I'm not sure of the exact numbers) I suggest a figure between the average annual wage for a male and female - £28,000 per person infected. I have used the average wages as described on this website:<br />http://career-advice.monster.co.uk/salary-benefits/pay-salary-advice/uk-average-salary-graphs/article.aspx<br />This would decrease in line with deaths. This is in line with the amount currently received by the co-infected who meet the stage 2 criteria, as outlined on the Anomalies document I have attached below. <br />~A payment in lieu of life insurance to be paid to families once an infected person has died, I suggest £250,000.<br />~Free prescriptions without having to apply for a pre-payment certificate every year and access to private treatment where the NHS cannot provide any care we need in a timely way.<br /><br />This would enable my husband and I to think about a future together and actually work towards achieving that. It would mean Adrian was looked after in the event of my death. It would mean I no longer needed to rely on my parents who are now in their 70s and would release them from their constant worry. It would give me and my family and my husband our lives back, to some degree. It would mean so much to me.<br /><br />I am conscious that nothing can bring back those who have lost their lives to the infections, or reverse the long-term health damage for those who survive. However, I believe that if the government were to establish a full and fair financial settlement, along with an acknowledgement of what happened/an apology, then at least we could all find the kind of closure that financial independence would bring.<br /><br />Finally, I would like to impress on you that the only way this campaign will end, thus enabling people to get on with their lives, will be if this is successfully sorted out once and for all.<br /><br />In order for this initiative to work I believe it is of vital importance that the affected community is directly involved, consulted and represented fully at every step.<br /><br />We all need resolution, and we do not need it to be dragged out for any longer than absolutely necessary, but whatever process is employed it needs to reflect the impact on all the affected community and the resultant need that has been created whether from Hepatitis (A, B, C, D, E, G, etc.), HIV, vCJD or other infection.<br /><br />The time has passed for commissioning endless medical reports and studies, or for politicians – however well motivated – to be deciding what happens to our lives. This hasn’t worked for the last thirty years and it won’t work now.<br /><br />A wide consultation is proposed but I need involvement and true representation this time, to ensure any exercise that informs a settlement is suitable. Currently, only the victims themselves and campaign representatives, such as Taintedblood, Manor House Group and CBC collectively, have the knowledge to inform this process. Could I therefore ask you to do everything within your power to represent me and the wider community at this crucial stage in the process?<br /> <br />Thank you – I look forward to your reply.<br /><br />Kind regards,<br /> <br />Ros"<br /><br />The main feedback I have had so far is that the amounts I've suggested are conservative. There is a balance to be struck between what we believe our lives to be worth and what the government may consider realistic. Do you think I have been cautious? I may revise this with my MP. <br /><br />Let me know what you think ...<br /><br /><br />- Posted using BlogPress from my iPhone<br />Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com0tag:blogger.com,1999:blog-4423318468276439005.post-78879918953050117212013-07-17T13:04:00.000+00:002013-07-17T13:04:01.798+00:00The Story of the Ankle Op - Pre Op
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<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;">Early
on the morning of Thursday 6 June 2013, having scraped myself out of bed almost
before I’d got into it, mum drove me to the Royal Orthopaedic Hospital in
Birmingham. I was due there at 7.30am to
have a right ankle arthroscopy and chielectomy.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;">This
procedure would be the joint equivalent of a scale and polish. My ankle has extensive arthritis from bleeds
into the joint when I was growing up. The joint
was steadily deteriorating and after two steroidal injections, aimed at
reducing the pain, hadn’t worked, this was the next step prior to the
possibility of an ankle fusion. It
seemed I was limping in the direction of a fusion, which would screw the ankle
joint into a fixed position removing the pain but almost completely restricting
movement, but I wanted to try these two final procedures before saying screw
it! The arthroscopy would clean out the
muck in the joint and attempt to smooth off the surfaces of the main two bones
to reduce the pain on movement and walking.
The cheilectomy would shave off the bony spurs that had grown on the
front face of both of the main ankle bones to try and increase my range of
movement.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;">Many
of my haemophiliac friends have had their ankles fused and swear it is the best
thing they have done. I’ve put it off as
long as possible because I’m a girl. Or
more specifically: a vain girly girl who has admitted to herself that the lure
of a beautiful high heel cannot be denied.
I cannot actually physically perambulate any more, once in said heels,
but I love being able to sit and look at a gorgeous pair of pointy heeled
feet. How daft is that?! Over the last few months of ankle weakness
and increasing pain I think I have finally reached the tipping point. Where pain overcomes stiletto pleasure. Or wedge pleasure. Or kitten heel pleasure. Or platform pleasure. Anyway, I think I am facing the wall of
reality onto which I have fallen due to stupidly high heels and finding that
screws and Clarks active air are the way of the future. <o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;">But
not quite yet! This is my final
operative fling before signing the consent form to be fused and upon very
sensible orthopaedic advice (not just cos I wanted to). I am having these procedures done in the full
and certain knowledge that they may not help and may, in fact, send me quicker
down the slope towards fusionville, but on the proviso that there <b><i>may</i></b>
be some short term pain relief and movement enhancement. So now you know my somewhat irrational reasoning!<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;">All
the preparatory work had been done. I’d
spoken to the haemophilia specialists at the Queen Elizabeth (QE), another
Birmingham hospital, to establish the treatment plan. They’d arranged for me to stay in over night
for what was usually a day procedure. I
would be having my clotting factor levels measured pre-op, then receiving 2000
units of Haemate P, then clotting factor levels would be taken post op and
another 1000 units of Haemate P administered that evening. Then the next morning my levels would be
checked once more and if they were ok I’d be free to go home, all being well
with the ortho docs. They’d also made
the decision to give me some platelets prior to the op. This was based on previous experience where
clotting factor ironically failed to make me clot and platelets had been needed
to finish the job. All this had been
arranged with QE blood bank and the Royal Orthopaedic team.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;">I’d
done my prep: legs Veeted, and then epilated to remove the hairs Veet left
behind. I would do it the other way
round but the Veet bit loosens them, or so I reckon, and epilating first is
inordinately more painful. Shaving can
be like taking razor wire to my legs and I can’t afford to wax on, wax off at
the moment. My toe nails had been naked
for a couple of weeks, to get them used to the exposure, and me used to the
look of em (not that picturesque if I’m honest). I’d purchased a new lightweight dressing gown
– half price from Sainsbury’s – so I wouldn’t swelter in the undoubted heat of
the hospital ward, and slippers that were a touch less manky than my usual
ones. I’d starved myself since before
midnight except for the vast quantity of pills and supplements I’m currently on,
which I’d swigged with my pint of water at 6am.
<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;">I
was ready. We were ready.<o:p></o:p></span></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;">Or
so I thought....</span></span></div>
<div class="MsoNormal">
<span lang="EN-US"><span style="font-family: Trebuchet MS, sans-serif;"><br /></span></span></div>
<div class="MsoNormal">
<span lang="EN-US"><i><span style="font-family: Trebuchet MS, sans-serif;">To be continued.</span></i></span></div>
<div class="MsoNormal">
<span lang="EN-US" style="font-family: "Noteworthy Light"; font-size: 14.0pt;"> <o:p></o:p></span></div>
<div class="MsoNormal">
<br /></div>
<!--EndFragment-->Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com0tag:blogger.com,1999:blog-4423318468276439005.post-65137330862091325742012-03-05T14:58:00.001+00:002012-03-05T15:12:45.956+00:00In the words of Gloria Gaynor ...<br />I am Rosamund Mary<br />I was born on the Isle of Man<br />I was adopted when I was 12 weeks old<br />I have a rare form of Von Willebrand's disease<br />I have less than 3% Von Willebrand's factor<br />I have less than 1% factor 8<br />I have injections to replace the clotting factor and stop bleeding<br />I learned to do them myself when I was 14<br />I started my periods when I was 13<br />I would bleed for 3 weeks out of 4 and then start all over again<br />I have taken hormone pills ever since then to keep the bleeding under control<br />I have always had acne on my chest from the hormone pills<br />I used to have horrendous period pain every month<br />I once had to stop my car and knock on a strangers door for help because I was blacking out from period pain<br />I now take hormones continuously because it's safer for me not to bleed<br />I was given Hepatitis C from contaminated NHS blood products<br />I was probably exposed with every injection I had in the 70's and early 80's<br />I had on average 1 injection a week then to control bleeds<br />I was not told by my specialist about my infection with Hepatitis C<br />I found out by accident at another hospital<br />I had a 12 month and then a 6 month course of treatment for the Hepatitis C<br />I had a biopsy before the 2nd course of treatment <br />I lost six pints of blood and nearly died after a bleed in my liver<br />I discovered just before I got married the Hepatitis C was no longer detectable in my blood<br />I have been ill with chronic fatigue ever since those treatments<br />I now have on average 2 injections a week of clotting factor to control bleeds<br />I have been exposed to vCJD<br />I have been unable to work since 2008<br />I have been unable to have children because of my ill health<br /><br />I am what I am<br />I am just right<br />I am all this<br />I am me<br /><br /><br /><center><a href='http://photo.blogpressapp.com/show_photo.php?p=12/03/05/1031.jpg'><img src='http://photo.blogpressapp.com/photos/12/03/05/s_1031.jpg' border='0' width='281' height='210' style='margin:5px'></a></center><br /><br /><br />Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com5tag:blogger.com,1999:blog-4423318468276439005.post-55206606651499599552012-01-22T18:06:00.003+00:002012-01-23T11:28:02.090+00:00Funny Blood the book - how to get yours ...<center><a href="http://photo.blogpressapp.com/show_photo.php?p=12/01/22/1591.jpg"><img border="0" height="281" src="http://photo.blogpressapp.com/photos/12/01/22/s_1591.jpg" style="margin: 5px;" width="204" /></a></center><br />
<br />
If you would like a copy of my mum's shiny new book Funny Blood - which is about adopting me as a baby, then finding out I had a severe bleeding disorder and the fun that ensued bringing me up - it costs £10.50 plus £2.50 postage (within the UK) if required. Multiple copies will require multiple postage though we may well do you a deal If you ask.<br />
<br />
Funny Blood cannot be had from all good retailers I'm afraid as mum has self published. Until of course we hit the best seller list, which may take a while as we've only had 500 copies printed!<br />
<br />
You can either send your cheque for the total amount, made out to Juliet Batten, to me:<br />
35 Shrubbery Street,<br />
Kidderminster,<br />
DY10 2QZ<br />
UK <br />
or mum:<br />
28 Franche Road,<br />
Wolverley,<br />
Kidderminster,<br />
DY11 5TP<br />
UK <br />
If you do this please include your name, address and the number of copies you require. <br />
<br />
Or if you want to send us a BACS payment please send us an email to roshasfunnyblood@gmail.com with your name, address and the number of copies you'd like and I'll send you the bank account details. <br />
<br />
We will then post, or personally deliver if you're local enough, your book. <br />
<br />
I will be putting it on Amazon but because mum's funded this herself I'd encourage you to buy direct from us because that way she gets a wee bit more from each book to help pay for the cost of producing it. We might just up the price a touch on Amazon to compensate, not sure yet. I'm dead proud of her I am, cos it's the first book she's ever written and she's been working on it for 8 years :D<br />
<br />
<br />
<br />
<br />
<center><a href="http://photo.blogpressapp.com/show_photo.php?p=12/01/22/1592.jpg"><img border="0" height="281" src="http://photo.blogpressapp.com/photos/12/01/22/s_1592.jpg" style="margin: 5px;" width="210" /></a></center><br />
<br />
Once you've read it we'd really appreciate your feedback. <br />
<br />
One last thing - it is about me so I understand if that puts you right off ;)Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com1tag:blogger.com,1999:blog-4423318468276439005.post-2796301395943881672011-11-14T20:47:00.000+00:002011-11-14T20:47:56.512+00:00Meeting with Anne Milton, Health Minister, October 24th<div style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">I recently attended a meeting with Anne Milton, Health Minister, on Monday October 24th at the Department of Health in London. My MP, Mark Garnier, managed to get me on the list of attendees. I was keen to attend to tell her personally how I felt about her announcement in January of this year which I believed failed the majority of the bleeding disorder community who had been affected by contaminated NHS blood products.</span></div><div style="font-family: "Trebuchet MS",sans-serif;"><br />
</div><div style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">This was our introduction to Ms Milton and her associates:</span></div><div style="font-family: "Trebuchet MS",sans-serif;"> <span style="font-size: small;"><br />
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</style> <![endif]--><span style="font-size: small;"> </span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif; line-height: normal; margin-bottom: 0.0001pt;"><i><span style="font-size: small;"><span>Thank you very much for seeing us all today. We would much prefer not to take up your time, but following your review and announcement regarding contaminated blood products in January 2011 we felt compelled to request this meeting, to urge you to re-visit the decisions made. </span><span style="color: black;">Specifically the one to retain the separation of the Hepatitis C infected community into two groups - stage 1 and 2 – when there is so much evidence that HCV is far more than liver disease. People within the Stage 1 group are ill, but not through liver damage.</span><span style="color: black;"><span> </span></span><span></span></span></i></div><i><span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"> </span></span></i><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif; line-height: normal; margin-bottom: 0.0001pt;"><br />
</div><i><span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"> </span></span></i><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif; line-height: normal; margin-bottom: 0.0001pt;"><i><span style="font-size: small;"><span>When Andrew Lansley (MP) introduced the review findings he said that he hoped they would remove anomalies in the existing support system and that they could bring us some comfort, consolation and maybe even closure. We believe that none of these objectives were met. Your decision was that continuous financial support was only required by 20% of our infected community, leaving the majority still suffering, struggling and still fighting for help. Maintaining defined stages of illness for Hepatitis C has increased not removed anomalies.<span> </span>We do not think the levels of support offered are adequate but today we are requesting the immediate ending of the two tier system.</span></span></i></div><i><span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"> </span></span></i><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif; line-height: normal; margin-bottom: 0.0001pt;"><br />
</div><i><span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"> </span></span></i><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif; line-height: normal; margin-bottom: 0.0001pt;"><i><span style="font-size: small;"><span>We believe that this is a fundamentally flawed decision and that an infected person deserves and should receive help because they were infected by NHS treatment, not if they meet highly specific, difficult to prove, levels of illness. We do not believe the conditional and means tested Fund which is being offered is a step forward, rather it is an echo of the system criticised by this government and is vastly inadequate given the needs of those within the stage 1 group. </span></span></i></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif; line-height: normal; margin-bottom: 0.0001pt;"><br />
</div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif; line-height: normal; margin-bottom: 0.0001pt;"><span style="font-size: small;"><span><i>Some of us belong to the various contaminated blood campaign groups. I would like to stress that we are here today as individuals speaking only on behalf of ourselves but working for the benefit of all those who have been marginalised by your actions. We hope to illustrate this by our own personal testimonies and the information included in our pack.</i></span></span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif; line-height: normal; margin-bottom: 0.0001pt;"><br />
</div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif; line-height: normal; margin-bottom: 0.0001pt;"><span style="font-size: small;"><span>I will put the evidence we gave her on here, in post to follow...</span></span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif; line-height: normal; margin-bottom: 0.0001pt;"><br />
</div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif; line-height: normal; margin-bottom: 0.0001pt;"><span style="font-size: small;"><span><i> </i> </span></span></div><span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif;"> </span></span><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif; line-height: normal; margin-bottom: 0.0001pt;"><br />
</div><span style="font-size: small;"><span style="font-family: "Trebuchet MS",sans-serif; line-height: 115%;"></span></span>Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com0tag:blogger.com,1999:blog-4423318468276439005.post-61658244403752672382011-09-11T07:56:00.001+00:002011-09-11T08:02:23.375+00:00Your Blood Supplement - Part 3<div style="font-family: "Trebuchet MS",sans-serif;">This is the third and final part of the piece I submitted to the Independent newspaper for their Your Blood Supplement. Only a tiny bit was included in the final piece and you can see it here:</div><div style="font-family: "Trebuchet MS",sans-serif;"><a href="http://projects.mediaplanet.com/uk/pain_1_8527/your_blood_small.pdf">Your Blood Supplement</a></div><div style="font-family: "Trebuchet MS",sans-serif;"><br />
</div><div style="font-family: "Trebuchet MS",sans-serif;"><i>Your Blood - Part 3</i></div><div style="font-family: "Trebuchet MS",sans-serif;"></div><div style="font-family: "Trebuchet MS",sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"></div><div class="MsoNormal" style="font-family: Verdana,sans-serif;">I found out just before I went to university that I had contracted Hepatitis C through contaminated blood products. Not really understanding what it meant at that stage I tried to forget about it and enjoy my university life.</div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><br />
</div><span style="font-family: Verdana,sans-serif;"> </span><br />
<div class="MsoNormal" style="font-family: Verdana,sans-serif;">I spent 6 weeks after university travelling around Chile with my best friend and though it was difficult to carry my clotting factor everywhere, when I had a massive nosebleed because of the altitude in the Andes it came in very handy.</div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><br />
</div><span style="font-family: Verdana,sans-serif;"> </span><br />
<div class="MsoNormal" style="font-family: Verdana,sans-serif;">Since then I have spent a lot of time dealing with the Hepatitis C, having two lots of treatment for it which made me very ill, and which I’m still suffering the after effects of 10 years later. The treatment did eradicate the Hepatitis, for which I’m very grateful, but I have been left with long term chronic fatigue which has had a massive impact on my life – much more so than my bleeding disorder. I’ve always said I can live well with a severe bleeding disorder, and I do day to day, but having a virus given to me and this taking away my ability to work and to live normally and have children is devastating.</div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><br />
</div><span style="font-family: Verdana,sans-serif;"> </span><br />
<div class="MsoNormal" style="font-family: Verdana,sans-serif;">I’m now 37 and bleeding-wise I am pretty stable. I’m on high dose hormone pills to control my periods still, which suits me. The alternatives for someone with my condition would be an endometrial ablation which has success in many cases, or a hysterectomy which used to be the treatment offered to young ladies with von Willebrands but today is generally a last resort. I have frequent gum bleeds which can be apropos of nothing or which can be caused by a crisp, or an apple, or a banana even. My nose bleeds are less frequent and I only have them when I have a cold or when I fly anywhere. I still get occasional joint and muscle bleeds and bad bruising at the drop of a hat. I inject myself anywhere from once a fortnight to twice a day, depending on the nature of my bleed. My attitude is that I get on with things and don’t worry because my mum does that for me ;)</div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><br />
</div><span style="font-family: Verdana,sans-serif;"> </span><br />
<div class="MsoNormal" style="font-family: Verdana,sans-serif;">I am lucky in that my condition was diagnosed when I was very young and was well managed whilst I was growing up. If I had not been diagnosed I’m sure that my life would have been extremely difficult and potentially hazardous. The problem that we still face is that von Willebrand’s disease is not a recognised and well known condition, in the medical profession as well as the public – even though in its mild form it affects 1% of the population. Many of those 1% are undiagnosed and may just think that easily bruising and nosebleeds run in their family. In fact diagnosis can lead to careful long term monitoring, access to medications that can make life easier and proper management of any surgery that may be required. The knowledge of those involved in the care of people with this condition is increasing all the time.</div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><br />
</div><span style="font-family: Verdana,sans-serif;"> </span><br />
<div class="MsoNormal" style="font-family: Verdana,sans-serif;">For the one in a million like me who have a severe form of the condition, nowadays the treatment is usually prophylactic – that means regular preventative injections of clotting factor. This is instead of injections after the event and can prevent bleeding episodes or tone them down, and will prevent joint damage such as the arthritis I have in my ankles. The off-putting thing about this at the moment is that our clotting factor is still manufactured from heat treated human blood products and therefore there is a level of risk as such. Whilst haemophiliacs are mainly treated by manufactured, synthetic (recombinant) blood products, because there are smaller numbers of us von Willebrands the development of recombinant products for us has been slower. I believe however we are getting there and for me this will be a great step forward in the next few years. I also read with interest the recent research that is being done on gene therapy and the hope that one day this could provide a complete cure for a genetic blood condition like mine.</div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><br />
</div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><br />
</div>Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com0tag:blogger.com,1999:blog-4423318468276439005.post-41257817943543680382011-09-01T20:57:00.003+00:002011-09-01T21:04:08.562+00:00Your Blood Supplement - Part 2This is the second part of the information I sent to the Independent for their Your Blood supplement. <br />
<br />
It is being published tomorrow Friday 2 September - I'll put the link on here in due course. <br />
<br />
<i>Your Blood - Part 2</i><br />
<br />
The next major challenge was, unsurprisingly, when my periods started. This was a moment my mum had dreaded and it lived up to her expectations. I bled for weeks each time with very little break in between periods. I was treated often – by now the treatment was injections of clotting factor manufactured from many blood donations – and also spent a good deal of time as an in-patient having blood transfusions. My teenage years were interesting to say the least.<br />
<br />
I was referred to an enthusiastic gynaecologist at the age of around 14 to see if my periods were so bad because of a gynae problem, but no, it was just my bleeding disorder. He did however experiment with the hormone pill until we found a high enough dose to control the bleeding in some way that meant I didn’t have to go to hospital multiple times every period and could try and resume a normal teenage life.<br />
<br />
My other issue during this time was that I had a number of spontaneous internal bleeds that required investigation and aggressive treatment and meant a good deal more time in hospital and off school. These were bleeds that were not caused by anything specific and that I only knew about because of the extreme pain and swelling. However I managed still to get both my GCSEs and my A levels and went off to university feeling really grown up. <br />
<br />
By this time I had taught myself how to self administer the injections. This changed my life totally because we no longer needed to be within a safe distance of a hospital but I could take my treatment with me and go anywhere – I really felt like the world was my oyster!<br />
<br />
<i>To be continued ...</i><br />
<br />
Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com0tag:blogger.com,1999:blog-4423318468276439005.post-78584368542757465562011-08-24T11:47:00.002+00:002011-08-24T11:50:18.299+00:00Your Blood Supplement<span style="font-family: "Trebuchet MS",sans-serif;">Recently I was asked to write about having von Willebrand's disorder for a supplement called Your Blood which is soon to come out with an issue of The Independent. I was asked to write a paragraph but being me that was like trying to insert an elephant into a letter box.</span><br />
<br />
<span style="font-family: "Trebuchet MS",sans-serif;">I am going to publish on my blog what I wrote, as it's a synopsis of my life with funny blood and I've not really put anything like that on here so far. The supplement that is being published contains a mere snippet as they only had a tiny space to fill. On here I'll break it down into sections. </span><br />
<br />
<i><span style="font-family: "Trebuchet MS",sans-serif;">Your Blood - Part 1 </span></i><br />
<br />
<div class="MsoNormal" style="font-family: Verdana,sans-serif;">When my mum and dad adopted me at the age of 6 weeks old in 1974, they thought they had been given a perfect little girl. At the age of 6 months when mum was at the GPs and mentioned that I had a bruise, she expected the doctor to say, oh yes that’s quite normal. She did not expect what actually happened next.</div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><br />
</div><div class="MsoNormal" style="font-family: Verdana,sans-serif;">I was referred to the hospital to have blood tests done. Mum sat on a stool at the hospital with me on her knee while they pricked my ear with a needle and watched it bleed. After over an hour with me crying and mum worrying, they told her the fact it had not stopped bleeding was abnormal and that I would need more tests.</div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><br />
</div><div class="MsoNormal" style="font-family: Verdana,sans-serif;">Mum was told by the Royal Manchester Children’s Hospital (RMCH) that her daughter had severe von Willebrand’s disease later that year. The next few years were particularly tricky. Learning to crawl, to walk and cutting then losing tiny teeth were all massive challenges. Mum and dad decided early on not to wrap me in cotton wool – though they were tempted, and some padding fashioned from socks with their toes cut off, filled with foam rubber, were popped over my knees when I began to crawl.</div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><br />
</div><div class="MsoNormal" style="font-family: Verdana,sans-serif;">As a severe bleeder every time I bumped, tripped over or cut myself we had the pleasure of a trip to the hospital over 20 miles away. This could be many times a week. When I bled it wasn’t necessarily heavy but it oozed for hours without stopping until I had treatment. Treatment in the 70s consisted of cryo-precipitate, which had to be defrosted once we arrived at the hospital, and then loaded up into a 50ml syringe or into bags that were infused via one of my veins. </div><div class="MsoNormal" style="font-family: Verdana,sans-serif;"><br />
</div><div class="MsoNormal" style="font-family: Verdana,sans-serif;">I remember a lot of my childhood as being spent in hospital and the nurses became part of our family and I felt at home there. I bruised very easily and had frequent nosebleeds and gum bleeds, all of which meant a trip to RMCH. I also had problems with internal bleeding into my joints – these were very painful and more disruptive for me as I had to rest until they got better. I also had to be pushed to school in a big blue stripy buggy which as a girl of 6 or 7 was not much fun. Generally though I lived my life as normally as possible given the amount of time I was on my way to, or from, or at hospital.</div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><br />
</div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><i>To be continued... </i></div>Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com0tag:blogger.com,1999:blog-4423318468276439005.post-65123566859926266882011-07-13T10:55:00.001+00:002011-08-24T11:49:30.321+00:00For a limited time only...<div style="font-family: Verdana,sans-serif;">This is me practising for my audition to join the choir Voices Unlimited. I'm putting it on here for a short time so my friends can see it, as it wouldn't upload to Facebook.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div class="separator" style="clear: both; text-align: center;"><br />
</div><span style="font-size: large;"><i><b>Too late - you missed it!</b></i></span><br />
<div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><br />
</div><span style="font-family: Verdana,sans-serif;">Apologies if I'm boring you for posting yet another video - inspiration of the written kind is evading me at present.</span><br />
<br />
<span style="font-family: Verdana,sans-serif;">Good news is ... I got in - woopeeeee :)</span>Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com2tag:blogger.com,1999:blog-4423318468276439005.post-15985121646178833652011-07-20T11:38:00.000+00:002011-07-20T11:38:57.439+00:00I beg your pudding?<span style="font-family: "Trebuchet MS",sans-serif;">I used to be a good listener</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Or at least I thought I was</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">You, dear friends, </span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Might tell me different</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">And I wouldn't mind :)</span><br />
<br />
<span style="font-family: "Trebuchet MS",sans-serif;">I tried to be a good listener</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Attentive, empathetic, sympathetic</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Remembering details</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Recalling them for future conversations</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Enjoying sharing such a simple pleasure</span><br />
<br />
<span style="font-family: "Trebuchet MS",sans-serif;">Now ...</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Now it's now so much fun</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Not so rewarding </span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Not so participatory</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">The intention is still there</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">I intend to listen</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">To converse</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">To share and enjoy</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">But I'm disabled</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Un able to </span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">I'm limited</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">By my CFS</span><br />
<br />
<span style="font-family: "Trebuchet MS",sans-serif;">I can listen for only so long</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Can focus for only so long</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">And so long ain't that long</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Before I drift away</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Before my mind wanders off</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Like a distracted chicken</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Pecking at the corners of my concentration</span><br />
<br />
<span style="font-family: "Trebuchet MS",sans-serif;">My eyes glaze </span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">My ears glue</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">I can see you</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">But you're fuzzy at the edges</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">I can hear you</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">But I'm fuzzy in the head</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">It doesn't go in</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Just bounces off the fuzz</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Into nothingness and nowhere</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">I nod</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">I murmur agreement</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">You may not even notice</span><br />
<br />
<span style="font-family: "Trebuchet MS",sans-serif;">But the one thing I am aware of</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Is that I'm gone </span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">I'm not really with you</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">I'm inside</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Looking out through fogged up glass</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">Desperately wanting to listen</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">To hear</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">To share</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">I wish I was taking it in</span><br />
<span style="font-family: "Trebuchet MS",sans-serif;">But I'm not there</span>Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com0tag:blogger.com,1999:blog-4423318468276439005.post-55159934187764622202011-06-27T15:15:00.001+00:002011-06-27T15:16:25.490+00:00Get Well From ME<span style="font-family: "Trebuchet MS",sans-serif;">I discovered these videos the other day through a Facebook friend and fellow CFS sufferer. The maker and narrator of the videos, Giles Meehan, is a recovered ME patient. That makes him sound like an alcoholic - sorry Giles. The point is he has got better and he has developed a website and a number of really informative videos to raise awareness about this often misunderstood, far more common than you might think, and devastating illness.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">I found this really easy to follow as he incorporates subtitles into the video to back up what he is saying. It is an excellent introduction to the condition of ME / CFS and makes it clear how complex a disorder this is in terms that someone struggling to understand will comprehend.</span><br />
<div style="font-family: "Trebuchet MS",sans-serif;"><br />
</div><div style="font-family: "Trebuchet MS",sans-serif;">If you check out his website:</div><a href="http://getwellfromme.com/" style="font-family: "Trebuchet MS",sans-serif;">Get Well From ME</a><br />
<span style="font-family: "Trebuchet MS",sans-serif;">you can read the entire transcript for this and see the rest in his excellent series of videos. However, I also intend to publish them on here in time.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">Hope that you find this informative - for me it was a case of total recognition.</span><br />
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<span style="font-family: "Trebuchet MS",sans-serif;">xxx</span>Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com0tag:blogger.com,1999:blog-4423318468276439005.post-62442917559614840872011-06-06T14:17:00.000+00:002011-06-06T14:17:48.805+00:00I Bruise Easily<div class="separator" style="clear: both; font-family: Verdana,sans-serif; text-align: left;"><br />
</div><div class="separator" style="clear: both; font-family: Verdana,sans-serif; text-align: left;">My song. Sing along if you like, I will be. </div><div class="separator" style="clear: both; font-family: Verdana,sans-serif; text-align: left;"><br />
</div><div class="separator" style="clear: both; font-family: Verdana,sans-serif; text-align: left;">Always loved it:</div><div class="separator" style="clear: both; text-align: left;"><br />
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</div><iframe allowfullscreen='allowfullscreen' webkitallowfullscreen='webkitallowfullscreen' mozallowfullscreen='mozallowfullscreen' width='320' height='266' src='https://www.youtube.com/embed/z2OKgLbI-sQ?feature=player_embedded' frameborder='0'></iframe><br />
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</div><div class="separator" style="clear: both; text-align: left;"><span style="font-family: Verdana,sans-serif;">x</span></div>Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com0tag:blogger.com,1999:blog-4423318468276439005.post-52258664493936651142011-05-12T18:22:00.000+00:002011-05-13T18:26:20.006+00:00ME / CFS International Awareness Day 2011Today, Thursday 12 May, is International Awareness Day for ME / CFS and Fibromyalgia. <br />
<br />
Some of those raising awareness suggested wearing purple so I did that today. Like many other not so good days I spent the day in my pyjamas and dressing gown. My purple dressing gown. <br />
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<center><a href='http://photo.blogpressapp.com/show_photo.php?p=11/05/13/1810.jpg'><img src='http://photo.blogpressapp.com/photos/11/05/13/s_1810.jpg' border='0' width='210' height='281' style='margin:5px'></a></center><br />
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I thought today well worthy of a blog post. I've not written anything for a couple of months. There are many reasons for that, from lack of inspiration to laziness but the most apt today is the reality of living with multiple invisible health conditions and the physical and mental toll they take. <br />
<br />
Did you notice, in the photo of my dressing gown basking in the sun above, the little purple flower?<br />
<br />
It's a weed actually, which has pushed its way determinedly up through the patio. I won't pull it up because I admire the little fellow. He's got spirit and he puts on a bright front to hide the pestilent weed inside.<br />
<br />
When I was a kid with only one invisible disorder - type 3 Von Willebrands, a severe bleeding disorder, I insisted on working and living through bleeding challenges. Of course when I say invisible I'm not meaning the times when my body was covered in purple and yellow bruises, nor when I had to go to school in a giant blue and white striped buggy at the age of 6 with ankle bleeds, but merely that the illness is within and when looking at me as a child no-one would've said - oh yes, there goes a severe bleeder. My point is, like most bleeders, I tried not to let it stop me or limit how I led my life. I studied when I was in hospital having blood transfusions, I danced when on crutches having had an arthroscopy, I worked when I was bleeding from blood poisoning until I could barely stand from losing so much blood. My attitude was always I will do it! And most of the time, with the help and encouragement of friends and family, I did. <br />
<br />
Whizzing time travel style to now and I'm faced with a plethora of invisible illnesses. A myriad of covert maladies. I need a group noun all of a sudden ... an affliction? A challenge? An infection?<br />
<br />
My Von Willebrand's resulted in Hepatitis C from my treatment, this resulted in CFS from either the HCV treatment or the virus itself, this has expanded over the years to include formication, fibromyalgia and from time to time depression. <br />
<br />
I would describe living with all these issues together like being in enforced limbo. <br />
<br />
Waiting. Waiting to feel better, waiting to move on with your life, waiting to be able to do what you want to do rather than just what you're able to, waiting to not have to manage everything so as not to make yourself worse, waiting to return to "normal". <br />
<br />
And it's hard. It's hard not to retreat from all those who when they say - you don't look ill - mean nothing but, gosh you look well for someone poorly, in an well-meaning kind of way. It's hard not to scream when someone asks you if you're feeling better when you haven't felt "better" for over 5 years now. <br />
<br />
Believe me I actually feel pretty good most of the time - pleased to be alive, pleased not to be more sick, pleased to see the cherry blossom or manage a little bluebell walk, pleased to listen to birdsong or church bells from my bed, pleased to sing at the top of my voice in the shower or the kitchen or the garden. <br />
<br />
And I believe it is totally possible for me to get better from at least one of my illnesses. Not the Von Willebrands. That's with me for life and as an old friend I'd be sad to lose it. The Hepatitis C is also theoretically gone, having kicked its arse with interferon and ribaviron, and I'm praying that truly is the case. The CFS, fibromyalgia and formication. They're just visitors, their time is limited. Admittedly this isn't a cure, it's a catalyst ... but I'm determined, you see, and strong. <br />
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Just like that little purple flower. <br />
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- Posted using BlogPress from my fancy pants phoneRoshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com0tag:blogger.com,1999:blog-4423318468276439005.post-85822088666807622812011-03-22T17:34:00.003+00:002011-03-23T14:32:50.854+00:00And the germs keep coming, coming ...<div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">On the second night of lurgy,</div><div style="font-family: Verdana,sans-serif;">my bad bug gave to me:</div><div style="font-family: Verdana,sans-serif;">12 tatty tissues</div><div style="font-family: Verdana,sans-serif;">11 sniffs a snivelling</div><div style="font-family: Verdana,sans-serif;">10 turns a tossing</div><div style="font-family: Verdana,sans-serif;">9 sudden sneezes </div><div style="font-family: Verdana,sans-serif;">8 soothers sucked</div><div style="font-family: Verdana,sans-serif;">7 toilet trips</div><div style="font-family: Verdana,sans-serif;">6 chapters read</div><div style="font-family: Verdana,sans-serif;">5 vay pour ruuuubs</div><div style="font-family: Verdana,sans-serif;">4 drinks of water</div><div style="font-family: Verdana,sans-serif;">3 sleeping tablets</div><div style="font-family: Verdana,sans-serif;">2 lem sips </div><div style="font-family: Verdana,sans-serif;">And a damn near non-existent night's sleeeeeep!</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">- Posted using BlogPress from my iPhone</div>Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com0tag:blogger.com,1999:blog-4423318468276439005.post-568968273167301272011-03-23T14:29:00.000+00:002011-03-23T14:29:56.015+00:00Betrayal and Lies -- Please Share<h6 class="uiStreamMessage" data-ft="{"type":"msg"}" style="font-family: Verdana,sans-serif; font-weight: normal;"><span style="font-size: small;"><span class="messageBody">This video has been put together by a fellow contaminated blood campaigner and friend of mine, Richard. It contains contributions from a number of friends, many of whom are tragically no longer with us.</span></span></h6><h6 class="uiStreamMessage" data-ft="{"type":"msg"}" style="font-family: Verdana,sans-serif; font-weight: normal;"><span style="font-size: small;"><span class="messageBody">It is disturbing but essential viewing if you are interested in the unnecessary infection of thousands of bleeders like me, through our NHS treatment.</span></span></h6><h6 class="uiStreamMessage" data-ft="{"type":"msg"}" style="font-family: Verdana,sans-serif; font-weight: normal;"><span style="font-size: small;"><span class="messageBody">Please take the time to watch and share it where possible. </span></span></h6><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/1pbgOHVB5B4?feature=player_embedded' frameborder='0'></iframe></div><h6 class="uiStreamMessage" data-ft="{"type":"msg"}" style="font-family: Verdana,sans-serif; font-weight: normal;"><span style="font-size: small;"><span class="messageBody"><br />
</span></span></h6><h6 class="uiStreamMessage" data-ft="{"type":"msg"}" style="font-family: Verdana,sans-serif; font-weight: normal;"><span style="font-size: small;"><span class="messageBody">Thank you x</span></span></h6>Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com0tag:blogger.com,1999:blog-4423318468276439005.post-71770420018964148502011-02-14T21:51:00.008+00:002011-02-15T18:03:51.315+00:00There's something about you, speeding through my veins until we hit the ground<div style="font-family: Verdana,sans-serif;">Been a bit bleurgh lately and my blog's been somewhat contaminated with blood issues. <br />
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Let's lighten the duck up with a cracking song:</div><br />
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<span style="font-family: Verdana,sans-serif;">Happy Valentines Day to anyone who bobs by xxx</span>Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com0tag:blogger.com,1999:blog-4423318468276439005.post-9284457417247350702011-01-18T16:33:00.000+00:002011-01-18T16:33:48.322+00:00Letter to the Health Minister regarding the Contaminated Blood Announcement<div class="MsoNormal" style="margin-bottom: 0.0001pt;"><span style="font-family: "Tahoma","sans-serif";">I am writing following your announcement to the House of Commons on Monday 10 January regarding HIV and Hepatitis C contaminated blood and blood products.</span></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><span style="font-family: "Tahoma","sans-serif";">I appreciated your apology on behalf of this administration and those who have failed to address this - the greatest tragedy of modern health care. I trusted that when you said you were trying to remove anomalies in the current support arrangements, you meant it. I admired your hope that whilst your announcement could not remove the pain and distress that we as individuals and families have suffered over the years, that the measures you announced could bring us some comfort, some consolation, and maybe even some closure. </span></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><span style="font-family: "Tahoma","sans-serif";">I am really sorry to say that upon listening to your announcement I was bitterly disappointed. Not only did it <i>not</i> offer comfort, consolation or closure but it was rather like someone poking me unmercifully in a particularly painful bruise. We bleeders have had a number of let-downs over the years but I have never been more angered and disillusioned in my life.</span></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><span style="font-family: "Tahoma","sans-serif";">The results of the review and the ensuing support you have proposed will <i>not</i> offer comprehensive support to all those affected by HIV and Hepatitis C contaminated blood, nor will it double payments to £50,000 for the 4,670 haemophiliacs affected by the HIV and HCV contaminated blood products as some media reports have suggested.</span></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><span style="font-family: "Tahoma","sans-serif";">Some points based on my own experience may help you to understand why I make the statement above. I have a severe bleeding disorder, von Willebrand’s disease. I received blood products from the NHS from the age of six months old. I have been infected with Hepatitis C and exposed to vCJD. In terms of what your announcement will provide me:</span></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div><div class="MsoListParagraphCxSpFirst" style="margin-bottom: 0.0001pt; text-indent: -18pt;"><ul><li><span style="font-family: Symbol;">·<span style="font: 7pt "Times New Roman";"> </span></span><span style="font-family: "Tahoma","sans-serif";">Free prescriptions – which my two cousins who have diabetes received the instant they were diagnosed, why do haemophiliacs and other bleeders not already receive this concession?</span></li>
</ul></div><div class="MsoListParagraphCxSpMiddle" style="margin-bottom: 0.0001pt; text-indent: -18pt;"><ul><li><span style="font-family: Symbol;">·<span style="font: 7pt "Times New Roman";"> </span></span><span style="font-family: "Tahoma","sans-serif";">Free counselling – I recently underwent counselling from my GPs. I waited 4.5 months for 6 sessions, at the end of which the counsellor expressed his awe at my inspirational manner in which I coped with everything that had happened to me and said he thought I didn’t need any more sessions. We had barely stroked the surface. I would really appreciate the support a good counsellor could give but would benefit from in-depth long term support. You are providing 6000 hours counselling over the next three years. This amounts to just under one and a half hours per person with infections caused by blood products or their widows / widowers. I do not consider this to be a comprehensive solution. Why impose such a limit?</span></li>
</ul></div><div class="MsoListParagraphCxSpLast" style="margin-bottom: 0.0001pt; text-indent: -18pt;"><ul><li><span style="font-family: Symbol;">·<span style="font: 7pt "Times New Roman";"> </span></span><span style="font-family: "Tahoma","sans-serif";">Access to a discretionary fund – I have had two courses of treatment for Hepatitis C. Both of these left me extremely ill and unable to work for the duration of the treatment and many months afterwards. Since the second course of treatment I have been left with chronic fatigue which has taken away my ability to work and has been directly linked to the Hepatitis C. I have ‘cleared’ the virus so I guess in the opinion of your medical panel my quality of life is greatly improved. However I have many symptoms that suggest my liver is not healthy and my quality of life is greatly compromised and my future uncertain. The idea that for any financial need I have to come begging to get even a modicum of help is not good enough. Will this fund replace my lost earnings? Will it compensate for not being able to get a mortgage or being unable to get sickness insurances? Will it pay for someone to clean and help with my daily needs so that my mother doesn’t have to anymore? Will it compensate for the fact that my husband and I are unable to have children due to my ill health or that some nights I cannot cook his tea or hold a conversation by the time he comes home? I would like to know the remit for this discretionary funding as soon as possible.</span></li>
</ul></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><span style="font-family: "Tahoma","sans-serif";">What your scheme does offer is an increase in the second stage Skipton Fund payment of £25,000 and annual ex gratia payments of £12,800 per annum. This is by no means the levels of payment that we were hoping for, but might have been seen as well intended, if they applied to all the 4,672 of us affected by contaminated blood products. However, the numbers currently meeting that stage two Skipton Fund criteria are approximately 15% of our community. That leaves roughly 3,800 haemophiliacs or those with von Willebrand’s disorder with the provisions outlined above, or in the case of widows and families of the deceased – nothing.</span></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><span style="font-family: "Tahoma","sans-serif";">I would like to also point out a number of other inadequacies that your new scheme will put in place.</span></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div><div class="MsoListParagraphCxSpFirst" style="margin-bottom: 0.0001pt; text-indent: -18pt;"><ul><li><span style="font-family: Symbol;">·<span style="font: 7pt "Times New Roman";"> </span></span><span style="font-family: "Tahoma","sans-serif";">You are removing the current anomaly which has meant widows of anyone dying from Hepatitis C before August 2003 would get nothing. This is long overdue. In its place you are providing a window of two months – until the end of March – for them to apply for the stage 1 and 2 Skipton Fund payments. Why is it necessary to have a cut off date at all? Surely if someone is eligible it doesn’t matter when they apply? Or is this an attempt to limit the number of applications and therefore the cost? You are asking the widows affected to access their partner / husband’s medical notes, wade through them to see if he is eligible (a traumatic task for any of them) and find a consultant willing to sign off on their stage two application. By the end of March 2011 this will be nigh on impossible.</span></li>
</ul></div><div class="MsoListParagraphCxSpMiddle" style="margin-bottom: 0.0001pt; text-indent: -18pt;"><ul><li><span style="font-family: Symbol;">·<span style="font: 7pt "Times New Roman";"> </span></span><span style="font-family: "Tahoma","sans-serif";">You are providing support to those who meet stage 2 of the Skipton Fund criteria. This immediately divides the infected community to those infected and suffering, and those dying. Not offering annual payments until someone has developed liver cirrhosis or cancer seems to me a very fiscal decision as they by nature then have a severely limited life expectancy. I presume those annual payments cease once the person dies?</span></li>
</ul></div><div class="MsoListParagraphCxSpMiddle" style="margin-bottom: 0.0001pt; text-indent: -18pt;"><ul><li><span style="font-family: Symbol;">·<span style="font: 7pt "Times New Roman";"> </span></span><span style="font-family: "Tahoma","sans-serif";">When HIV support was announced, whilst it was a flawed scheme, it at least paid out to <i>all</i> those infected, a decision you have chosen not to take for HCV infected. I know when those payments were made, the prognosis for HIV infectees was bleak. Nowadays the treatments are such that many with HIV are relatively healthy and do have some quality of life. However, whilst your report acknowledges that people infected by chronic Hepatitis C – that’s 4670 of the bleeding community – suffer a demonstrable loss in quality of life, at least as great as those with HIV, your lack of on-going and non-discretionary support does not back this up.</span></li>
</ul></div><div class="MsoListParagraphCxSpMiddle" style="margin-bottom: 0.0001pt; text-indent: -18pt;"><ul><li><span style="font-family: Symbol;">·<span style="font: 7pt "Times New Roman";"> </span></span><span style="font-family: "Tahoma","sans-serif";">The proportion of our affected community that will receive the ex gratia payments is roughly 15%. I do not consider this to be comprehensive or adequate and how you could think this would offer comfort to many, is beyond me.</span></li>
</ul></div><div class="MsoListParagraphCxSpMiddle" style="margin-bottom: 0.0001pt; text-indent: -18pt;"><ul><li><span style="font-family: Symbol;">·<span style="font: 7pt "Times New Roman";"> </span></span><span style="font-family: "Tahoma","sans-serif";">I believe the Stage 2 criteria that once met entitles those affected to an extra £25,000 lump sum and annual support of £12,800 to be flawed. I am aware of some cases where haemophiliacs have been certified by their doctors as meeting these criteria when they do not. I do not begrudge my friends to whom this applies, I am pleased for them as they no doubt deserve the help. But whilst this appears to indicate the support of the doctor for the patient, it does make this method of classifying need unsound.</span></li>
</ul></div><div class="MsoListParagraphCxSpLast" style="margin-bottom: 0.0001pt; text-indent: -18pt;"><ul><li><span style="font-family: Symbol;">·<span style="font: 7pt "Times New Roman";"> </span></span><span style="font-family: "Tahoma","sans-serif";">For some reason the scheme only applies to England and you had not spoken to the equivalent ministers in the devolved administrations prior to your announcement to make them aware of your plans. You say it is up to them when and if they administer the same arrangements. I am urging Wales, Scotland and Northern Ireland to reject this minimalistic approach and put in place something that is actually comprehensive and does meet the needs of their citizens who are NHS infected patients.</span></li>
</ul></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><span style="font-family: "Tahoma","sans-serif";">It appears to me that whilst saying the right things, your actions have entirely failed to back this up and in fact only succeeded in doing the minimum for the minority. You asserted a number of times that this was not due to cost but how else can one view these measures?</span></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><span style="font-family: "Tahoma","sans-serif";">For those of us with Hepatitis C it seems from your announcement, not to matter that we were infected until we meet this deficient criteria at a potentially life threatening stage of our illness. Even then what we will be offered will be too little to be of much use and at a time which is too late. That’s approximately 4000 of us who have had our lives shattered by contaminated blood products – unable to work, unable to get mortgages, unable to obtain life and travel insurances and unable to have children. I’m not talking about a few exceptions within that 4000, I’m talking about most of us. It seems from your discussions with patients and patient groups that you have not taken this on board but have instead taken the word of medical specialists who are not living with the condition and all the difficulties that entails.</span></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><span style="font-family: "Tahoma","sans-serif";">I acknowledge that those from the 4000 who met the Skipton Fund Stage 1 criteria did get the first payment of £20,000 but that was over ten years ago now and we have had no help since. </span></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><span style="font-family: "Tahoma","sans-serif";">I would also like to take issue with your insistence that the Republic of Ireland paid out compensation because they accepted liability and the case here in the UK is different. Were you not aware of the High Court case last year in which the honourable Mr Justice Holman ruled that the Irish paid out on compassionate grounds, with no acceptance of liability? Would you please explain how you think the High Court ruling does not apply? </span></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><span style="font-family: "Tahoma","sans-serif";">Given that your aforementioned statement is flawed I would like to revisit the argument used by Anne Milton for not adopting the Irish levels of ex gratia payment which were based on your estimate that the cost would be £3.5 billion. From the estimation I received from Anne Milton:</span></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div><div class="MsoListParagraphCxSpFirst" style="margin-bottom: 0.0001pt; text-indent: -18pt;"><ul><li><span style="font-family: Symbol;">·<span style="font: 7pt "Times New Roman";"> </span></span><span style="font-family: "Tahoma","sans-serif";">You used the figure of around 4700 infected with HIV and / or Hepatitis C from Lord Archer’s report.</span></li>
</ul></div><div class="MsoListParagraphCxSpMiddle" style="margin-bottom: 0.0001pt; text-indent: -18pt;"><ul><li><span style="font-family: Symbol;">·<span style="font: 7pt "Times New Roman";"> </span></span><span style="font-family: "Tahoma","sans-serif";">You made an assumption that the Republic of Ireland (RoI) infected individuals received an average of £750,000. This was based on informal discussions with RoI colleagues which indicated that payments ranged between £500,000 and £1 million. </span></li>
</ul></div><div class="MsoListParagraphCxSpLast" style="margin-bottom: 0.0001pt; text-indent: -18pt;"><ul><li><span style="font-family: Symbol;">·<span style="font: 7pt "Times New Roman";"> </span></span><span style="font-family: "Tahoma","sans-serif";">Your estimation therefore was a calculation based on the estimated number of infectees 4,700 multiplied by the payout in RoI of £750,000, which equated to £3.525 billion – and you stated that this wouldn’t include anything for carers or dependents.</span></li>
</ul></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><span style="font-family: "Tahoma","sans-serif";">My interpretation of this estimate was that this would mean you awarding £750,000 to the total number of those infected by contaminated blood products. It would also include payments of £750,000 to widows or families of those within the 4,700 who have died. That would indeed be a one off £3.525 billion cost but would, in contrast to your statement, have <i>included</i> carers and dependents. Our community had suggested that this could have been spread over three or more years to spread the cost in these difficult times.</span></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><span style="font-family: "Tahoma","sans-serif";">We campaigners do persist however, in our assertion that cost savings were a causal factor back in the 70s and 80s for this hideous tragedy occurring. And therefore that citing this argument now after 20 years of government inaction is adding insult to injury.</span></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><span style="font-family: "Tahoma","sans-serif";">You may ask what I would consider a meaningful level of support - I would suggest a reasonable and comprehensive support arrangement to be:</span></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div><div class="MsoListParagraphCxSpFirst" style="margin-bottom: 0.0001pt; text-indent: -18pt;"><ul><li><span style="font-family: Symbol;">·<span style="font: 7pt "Times New Roman";"> </span></span><span style="font-family: "Tahoma","sans-serif";">A lump sum ex gratia payment made on moral grounds to all patients infected by contaminated blood products or their widows / families (4,672 people) of £300,000 – this payment could be made over three years and my total estimation of cost would be £1.4 billion. Or £467,200,000 per annum for three years.</span></li>
</ul></div><div class="MsoListParagraphCxSpMiddle" style="margin-bottom: 0.0001pt; text-indent: -18pt;"><ul><li><span style="font-family: Symbol;">·<span style="font: 7pt "Times New Roman";"> </span></span><span style="font-family: "Tahoma","sans-serif";">An annual ex gratia index linked payment made on moral grounds to all patients infected by contaminated blood products, to be paid whilst they are still alive (est. 2600 people) I suggest the median between the average annual wage and the minimum annual wage - £18,500 per person infected. My estimation of cost per annum would be £48.1 million but this figure would decrease in line with deaths.</span></li>
</ul></div><div class="MsoListParagraphCxSpMiddle" style="margin-bottom: 0.0001pt; text-indent: -18pt;"><ul><li><span style="font-family: Symbol;">·<span style="font: 7pt "Times New Roman";"> </span></span><span style="font-family: "Tahoma","sans-serif";">The total cost for my scheme would be £515.3 million per annum for the first three years and then £48.1 million decreasing from then on. You would subtract from this the current cost of the HIV annual payments, which this scheme would replace.</span></li>
</ul></div><div class="MsoListParagraphCxSpLast" style="margin-bottom: 0.0001pt; text-indent: -18pt;"><ul><li><span style="font-family: Symbol;">·<span style="font: 7pt "Times New Roman";"> </span></span><span style="font-family: "Tahoma","sans-serif";">In order for the costs to amount to your estimated £3.5 billion this scheme would need to run for 43 years.</span></li>
</ul></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><span style="font-family: "Tahoma","sans-serif";">This illustration is my own and does not represent the views of anyone else. Whilst I wouldn’t claim that this would bring comfort or consolation to any of those infected because it is only money and I’m sure it would be far from closure for some, I do think that it could at least be considered compassionate and constructive support that acknowledges and respects the suffering of those harmed in this tragic way.</span></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><span style="font-family: "Tahoma","sans-serif";">In composing this letter I have had to find energy where there is little, coherence where there is often confusion, fight when I desire peace and action when my body cries out to rest. The delay in sending reflects the mental and emotional effort writing this letter has demanded and I do hope you reflect on that when composing, or not, your reply.</span></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><span style="font-family: "Tahoma","sans-serif";">Health permitting I would be willing to discuss any of this further with you and your department as we continue to work towards a just and appropriate solution.</span><br />
<br />
<br />
<br />
<span style="font-family: "Tahoma","sans-serif";"><i>Sent today to Andrew Lansley Health Minister, David Cameron Prime Minister, Nick Clegg Deputy Prime Minister, Mark Garnier my MP, Ann Milton MP, Diane Abbott MP, Geoffrey Robinson MP, Philip Lee MP, Chris James CEO The Haemophilia Society. Not holding my breath for replies...</i></span></div><div class="MsoNormal" style="margin-bottom: 0.0001pt;"><br />
</div>Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com2tag:blogger.com,1999:blog-4423318468276439005.post-77105788047520331952011-01-10T21:02:00.000+00:002011-01-10T21:02:56.039+00:00Government Announce Results of their Contaminated Blood ReviewI'm really upset. The government are doing the least amount they can for those who meet the stage 2 Skipton Fund criteria and widows who can prove that their partners met that criteria. This is a small minority of our community and an inadequate, difficult to fulfil criteria. It is so minimal I'm bloody crying. <br />
<br />
What about the majority of us affected by this, as Andrew Lansley the Health Minister himself said, great tragedy. Nothing. Actually not nothing, free prescriptions and counselling. Well thanks, that makes up for me being too ill to work, being unable to have children, being a sham of a person and having a totally uncertain future. Nice one. <br />
<br />
I intend to blog more fully about the Government's announcement and their arguments against doing anything more meaningful over the next week. <br />
<br />
In the mean time - happy new year.Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com2tag:blogger.com,1999:blog-4423318468276439005.post-62594132777183960842010-10-18T15:07:00.002+00:002010-10-18T18:06:27.683+00:00Contaminated Blood House of Commons Debate - 14.10.10<div style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;">Around 100 of us crowded into the public gallery in the House of Commons last Thursday to hear a historic back bench debate on contaminated blood products. Haemophiliacs and von Willebrands, infected and affected, wives and husbands, families of those too sick to be there and widows and children of those who have died.<br />
<br />
We had come to London with a sense of anticipation, a sense of hope that after over 20 years of campaigning and the loss of 1974 lives, we were finally being met by a government who stood for fairness. A government who had indicated from the PM down that they wanted to help us to bring closure to the victims, of what has been described as the "worst treatment disaster in the history of the NHS" by Lord Robert Winston.<br />
<br />
It started with a worrying turn of events. The government tried to amend the original debate motion. Not to change a couple of words within it, but to re-write it, bar the first three words "That this house...". The government wanted to take out the acknowledgement of past failures and limited response so far to the tragedy, wanted to take out the proposal to implement Lord Archer's inquiry recommendations; even wanted to remove the apology to the survivors, their families and the bereaved. In its place their amendment merely recognised the [inadequate] recompense that had been provided by previous administrations, estimated the cost of implementing the Archer recommendations as being £3 billion, pledged to review some of those recommendations and deeply regretted that many people were infected by contaminated blood products.<br />
<br />
We were shocked and dismayed by this attempt to wreck our motion. However the speaker ruled that as this was a back bench debate the original motion should not be amended by front benchers and that our debate would go on as it was.<br />
<br />
Hooray we thought. There followed three hours of passionate, personal and moving 5 minute statements from 24 MPs, all of whom had put in to speak at the debate. The support and understanding we had from MPs of all parties was amazing. There was no arguing over the basic facts about what happened, no dispute that here we had a terrible medical scandal that resulted in a human catastrophe and great need. There was no argument about the fact that a proper financial settlement and hopefully an apology was required urgently. I say urgently because, as was pointed out by one MP people continue to die at the rate of one per week. We don't have time to hang around whilst politicians play games.<br />
<br />
MPs paid tribute to members of our community who have died and to those who are still waiting and dying. Whilst tears were shed in the gallery I was horrified to see two front bench MPs talking and laughing as Owen Smith spoke of Leigh Sugar, a haemophiliac from Wales who died from Hepatitis C earlier this year. Where was the respect there?<br />
<br />
It was debated as to why we had referred to the scheme in the Republic of Ireland, as this was felt to be too generous for the government to commit to. It was said more than once during the debate that this was put into the motion because it was what the campaigners had wanted. To an extent this is true, but that is because it was the bottom line for compensation that was cited by Lord Archer in his private inquiry report - a report largely ignored by government and one that the judicial review earlier this year compelled them to revisit. <br />
<br />
What the victims of this tragedy want is a settlement that is fair and adequate - a settlement that treats this group with decency and respect and ensures that what remains of our ruined lives is spent at least financially secure. Ireland's settlement which was implemented in 1996, and is still being honoured despite their financial difficulties, is one that is considered appropriate for the nature of the difficulties victims face.<br />
<br />
As one of our campaigners recently said: </span> </div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif; line-height: normal;"><span style="font-size: small;"><b>'You can't give us back our health, but you can give us back our dignity'.</b></span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif; line-height: normal;"><br />
</div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"><span style="line-height: 115%;">The greatest despair though, came with the government's apparent inability to work out simple maths. The question was how did the government arrive at the figure of £3 billion that was in their amendment, and that was their estimated cost of putting in place a similar compensation scheme. The calculations were apparently accurate but were not able to be produced during the debate. We are still waiting to see them. We believe the costs to be far lower. </span></span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"><span style="line-height: 115%;"><br />
</span></span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"><span style="line-height: 115%;">We are well aware as a community that the timing on this is far from ideal however it is important to note that the reason we were infected by these devastating viruses was not least because</span></span><span style="font-size: small;"><span style="line-height: 115%;"> the government diverted money away from developing self-sufficiency within the UK blood products production. Money was not made available then, over thirty years ago and on many occasions since then when finances were there, administration after administration has ducked responsibility. We haven't just turned up wanting a hand out. For years successive governments have ignored the issue. It's not about party politics, it's about doing the right thing and it's about time that the victims of this disaster are given what they deserve - justice.<br />
<br />
This was all acknowledged at the debate and the need to act now, in the name of justice and moral responsibility, was stressed time and again. <br />
<br />
However the vote was lost. Why was this? Because the government had produced a three line whip. This compelled over 200 MPs who had not necessarily even attended the debate to come and vote against it when the bell rang. It also meant that my own MP spoke passionately for us, but voted against us.<br />
<br />
We appreciate that times are tight and that a cost in excess of £3 billion at this time of comprehensive spending reviews and cuts may be seen as irresponsible. However what about getting your sums right before trying to write us off? <br />
<br />
We are not a greedy, compensation grabbing bunch of individuals - we are genuinely sick, dying, unable to contribute to society the way we could and to look after our families the way we want, because we received contaminated blood products from the NHS. All we want is to not have to fight for justice anymore and to have our losses recognised. It wasn't right then, it isn't right now and we won't be going anywhere.<br />
<br />
What we came away with is the promise to review the situation by Christmas. The present government have the opportunity to put this right and they need to know that we will never give up.</span></span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"><span style="line-height: 115%;"><br />
</span></span></div><div class="MsoNormal" style="font-family: "Trebuchet MS",sans-serif;"><span style="font-size: small;"><span style="line-height: 115%;">Fairness, Mr Cameron? Mr Clegg? Let's see some at last.</span></span><br />
<br />
<br />
</div>Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com7tag:blogger.com,1999:blog-4423318468276439005.post-11125702141247276602010-09-17T10:45:00.001+00:002010-10-02T03:44:26.109+00:00HCV and Me - An Affair To Forget<div style="font-family: Verdana,sans-serif;">You came into my life insidiously.</div><div style="font-family: Verdana,sans-serif;">Like a demon you crawled under my skin,</div><div style="font-family: Verdana,sans-serif;">through my veins and into the heart of me.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">Unaware of the danger I plunged on,</div><div style="font-family: Verdana,sans-serif;">not understanding what it was</div><div style="font-family: Verdana,sans-serif;">I was introducing to myself.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">You were there</div><div style="font-family: Verdana,sans-serif;">from the very beginning,</div><div style="font-family: Verdana,sans-serif;">intrinsically part of me.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">But I knew nothing.</div><div style="font-family: Verdana,sans-serif;">Ignorant of how you were taking over my body,</div><div style="font-family: Verdana,sans-serif;">destroying my soul.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">When, later on, I discovered you,</div><div style="font-family: Verdana,sans-serif;">you blew me away.</div><div style="font-family: Verdana,sans-serif;">Turned me upside down</div><div style="font-family: Verdana,sans-serif;">dragged me inside out.</div><div style="font-family: Verdana,sans-serif;">Possessing.</div><div style="font-family: Verdana,sans-serif;">Obsessing.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">Flung my life in an unexpected, unbalanced direction.</div><div style="font-family: Verdana,sans-serif;">You exposed my dark and twisted self.</div><div style="font-family: Verdana,sans-serif;"></div><div style="font-family: Verdana,sans-serif;">I was never to be the same.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">I railed and fought to resist</div><div style="font-family: Verdana,sans-serif;">the all encompassing nature </div><div style="font-family: Verdana,sans-serif;">of your poison.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">Yet you clung to me,</div><div style="font-family: Verdana,sans-serif;">weighing me down,</div><div style="font-family: Verdana,sans-serif;">changing me,</div><div style="font-family: Verdana,sans-serif;">infecting me,</div><div style="font-family: Verdana,sans-serif;">draining me.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">Now am I free of you?</div><div style="font-family: Verdana,sans-serif;">Are you gone?</div><div style="font-family: Verdana,sans-serif;">Have you left me, in peace?</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">Or still dangling,</div><div style="font-family: Verdana,sans-serif;">turning like a body hanging from a tree,</div><div style="font-family: Verdana,sans-serif;">waiting for the wind to pick me up</div><div style="font-family: Verdana,sans-serif;">and play with me once again.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">I hate you.</div><div style="font-family: Verdana,sans-serif;">For the gifts you gave me.</div><div style="font-family: Verdana,sans-serif;">The tumultuous emotional tornado,</div><div style="font-family: Verdana,sans-serif;">the paralysing physical pain.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">But you made me.</div><div style="font-family: Verdana,sans-serif;">Who I am.</div><div style="font-family: Verdana,sans-serif;">You are still hidden within.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">There will always be a fragment of me</div><span style="font-family: Verdana, sans-serif;">devoted to you.</span>Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com0tag:blogger.com,1999:blog-4423318468276439005.post-32318827166194527562010-09-10T13:34:00.000+00:002010-09-10T13:34:56.445+00:00Bleed Hazards<div style="font-family: Verdana,sans-serif;">As a type 3 von Willebrand, life is like a box of chocolates. One which has been sabotaged by an ex lover and is filled with poisoned soft centres and pebble filled truffles which will break your teeth.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">Being a severe bleeder, activities which are undertaken without a second thought by a non bleeder, to me can be high risk activities. A high risk, that is, of causing bleeding or bruising.</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;">This is my top <strike>10</strike> 11 list of everyday, bleed inducing things:</div><div style="font-family: Verdana,sans-serif;"><i><br />
</i></div><div style="color: #990000; font-family: Verdana,sans-serif;"><i>Ferocious Fodder:</i></div><div style="font-family: Verdana,sans-serif;">1. <span style="color: #990000;">Fruit </span>- apple skin is one of the most efficient ways of getting a gum bleed. The safest way for me to eat an apple is to cut bite size chunks off with a very sharp knife... Don't worry, I wear Teflon gloves. Bananas can have the same effect if they are a little unripe, which is, of course how I like them.</div><div style="font-family: Verdana,sans-serif;">2. <span style="color: #990000;">Puff pastry</span> - the equivalent of eating razor blades, very dangerous to gums, tongue and inside cheeks. Ruins the enjoyment of a good pastry.</div><div style="font-family: Verdana,sans-serif;">3. <span style="color: #990000;">Muffins </span>- surprisingly risky - had 18 hours of gum action following a particularly chippy bit of chocolate in a muffin the other day.</div><div style="font-family: Verdana,sans-serif;">4. <span style="color: #990000;">Sandwiches </span>- a crusty roll has obvious dangers. Crusty bread equally so. However I have bled from an encounter with the softest fluffiest baps filled with only egg mayonnaise, perhaps it was the cucumber...</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><i></i></div><div style="color: #990000; font-family: Verdana,sans-serif;"><i>Personal Mean Hygiene:</i></div><div style="font-family: Verdana,sans-serif;">5. <span style="color: #990000;">Tooth brushing</span> - most common cause for me of gum and tongue bleeding. I've been told many times by many dentists that brushing more frequently will reduce the overall bleeding tendency - I can tell you I've put this thoroughly to the test and it's nonsense: more brushing = more bleeding - fact. I am still to try the Sonicare toothbrushes that have been recommended by a fellow bleeder - I will let you know how that goes...</div><div style="font-family: Verdana,sans-serif;">6. <span style="color: #990000;">Flossing</span> - not something I relish as this is akin to running wire thro mozzarella.</div><div style="font-family: Verdana,sans-serif;">7. <span style="color: #990000;">Hair removal</span> - waxing, plucking, epilating, even hair removal creams can cause anyone to bleed or bruise - with a type 3 von Willebrand this can be to very dramatic effect. Legs which turn purple upon waxing may be a little alarming for your beautician. My current preferred method of defuzzment - epilation - even post clotting factor treatment can leave my legs covered in petechiae. My first ever attempt to shave my legs as a naive teenager resulted in a blood soaked kitchen (I know, weird choice) and a cover story about dropping a knife and it impaling my shin - not sure that was ever actually believed!</div><div style="color: #990000; font-family: Verdana,sans-serif;"><i><br />
</i></div><div style="font-family: Verdana,sans-serif;"><i style="color: #990000;">Household Sore Chores:</i></div><div style="font-family: Verdana,sans-serif;">8. <span style="color: #990000;">Painting </span>- an activity I used to enjoy is now more risky due to a spot of ceiling painting which caused a shoulder bleed. This has weakened my shoulder and it has a tendency to bleed if used to decorate. No really, it does.</div><div style="font-family: Verdana,sans-serif;">9. <span style="color: #990000;">Correspondance </span>- writing letters, whilst now an old fashioned activity is also a hazardous one for me. Paper cuts from the writing paper is common and if you've had letters from me they may well have contained at least one of my bloody prints - I'm never gonna get away with murder, I'm far too forensically generous. Licking the envelope slices my tongue into strips. Stamps used to stick to my lips and rip them into bleeding. Owwee. Thank goodness for self adhesiving ones I say.</div><div style="color: #990000; font-family: Verdana,sans-serif;"><i><br />
</i></div><div style="font-family: Verdana,sans-serif;"><i><span style="color: #990000;">Medical Maladies:</span></i></div><div style="font-family: Verdana,sans-serif;">10. <span style="color: #990000;">Plaster removal</span> - luckily I'm not allergic to latex having such an aggressive plaster habit. However removing a plaster is in itself a dangerous job and whilst ripping it off in one smooth, swift motion is ideal from a pain point of view, it is a perfect way to cause post plaster bruising. Nice.</div><div style="font-family: Verdana,sans-serif;">11. <span style="color: #990000;">Medic alert</span> - it is ironic that a medic alert bracelet, worn continuously in case of emergency because it just might save my life, causes bruises and burns. If I lean on my hand and the bracelet is in the wrong place it bruises me, this most commonly occurs when I'm injecting clotting factor into that arm. When stirring a hot pan of food the bracelet heats up so quickly I don't notice until it's branding me with "Von Willebrands Disease (Type 3)". I suppose that's one way to avoid having to wear it in future... </div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><br />
</div><div style="font-family: Verdana,sans-serif;"><br />
</div>Roshttp://www.blogger.com/profile/11834799609966669020noreply@blogger.com0