Thrombosis Support & Lifeblood..... a match made in heaven?

So tomorrow I have a meeting with Lifeblood:The Thrombosis Charity trustees to put forward my Thrombosis Support idea and how we can work together, and convince them to do so hopefully!

As many of you know this blog was set up not only for me to have a little moan about how thrombosis has affected me and my daily dealings with it, but also because I am passionate about creating a support network for those affected by thrombosis. It is one thing to moan about what isn't in place and what is needed, and quite another to actually get off your backside and do something about it- that is what I am trying to do.

I have had big ideas, and high hopes of what Thrombosis Support can be and visions of advertising campaigns in the future and national races in aid of it, and then often feel slightly deflated when I realise I am just one person trying to make something happen. That is one of the reasons that I want to work with Lifeblood, under their umbrella as it where. They are an established charity with I feel a hole, support, that needs to be fronted and filled- I think that is where my ideas come in. I did not realise just how much red tape there is around setting up a charity and I certainly do not often have the patience with form filling in, I think together we can really help others and make a difference. Also one of things I have noticed is that a lot of the fundraising for Lifeblood is done by those who have been affected by Thrombosis, be that have had an episode themselves, know someone who has been or who has sadly lost a loved one. I think to continue the support Lifeblood so desperately needs from the public there needs to be something in place for them, (not to belittle what Lifeblood already do as that is brilliant a too needed).  A support network where they can interact on a number of different levels with people who know what they are going through, where they can offer each other coping methods, advice, support, compassion and friendship. I go from my own experience, I desperately wanted to communicate with someone who understood the emotional side of my thrombosis, and the continuing effects. I remember my consultant writing in a report regarding my PTS and compression stockings that "the patient should wear full length compression stockings from first thing in the morning till last thing at night, even when on holiday and in a hot climate, though a little discomfort may be felt she will soon get used to it." I really wanted to call him and say "you try wearing them all day in a hot climate!" cheek I thought you have no idea. I needed humility and reality about how my life was now going to be. I really hope that that is what I can offer.

The meeting is tomorrow- if any of you have anything you would like me to say from your personal opinion of what is needed, please let me know.

Thanks for reading and if you're able to please help me raise money for Lifeblood The Thrombosis Charity please go to my page and lets hope that Thrombosis Support can become one of their new initiatives!

www.justgiving.com/katherineelizabeth

Help me, help others, help themselves

National Thrombosis Awareness Week 6th-10th May Swimathon Bakeoff!

So I started the day with a swim and then dropped off a batch of cakes to my friend for her birthday- felt like a national thrombosis awareness week fundraising dummy run!

I will be swimming 8km thats 400 lengths and taking 32 orders for cakes.

Maybe you have a birthday coming up and fancy a cake, perhaps it would be the perfect treat for all of your work colleagues or maybe you just like eating cake and this is the perfect excuse!

Order forms can be downloaded here

If you don't fancy any cakes and just want to sponsor me for swimming check out my page:

www.justgiving.com/katherineelizabeth

Thank you

Also I will be doing a raffle!
Tickets cost £1 per ticket £5 a strip, buy for you chance to win a 13" uber cake!!!

x

National Thrombosis Week 2013 6th-10th May

After the success of last year I am getting myself geared up for this years National Thrombosis Week. I was blown away last year by the generosity and was able to raise over £1000 for Lifeblood and £200 for Thrombosis Support, I am hoping to smash that target this year!.

With that in mind, not only am I going to do something to push my body, I am going to something nice for all of you!

Some of you may now I am partial to a little bit of baking, and will be baking a number of different cakes and breads for you to purchase- I will give a guide price but hey its charity so if you want to purchase them for more I would happy for you to do so!

Here are a sample of some cakes I have previously made:

Details of my fundraising page can be found at :

http://www.justgiving.com/katherineelizabeth

It does not matter how slowly you go as long as you do not stop......

So its been a while since I posted a blog and really since anything else has happened with Thrombosis Support- but as the title of this post suggests, it isn't that it isn't moving forward, it is, it's just I really want this project to work and therefore thinking and taking the time is key.

The end of last year was one of acceptance and not exactly the easiest. As you may know from reading some of my other posts, I was diagnosed with DVT and PE's and now Post Thrombotic Syndrome following surgery where I was not given the blood thinning medication I needed nor any information about the risks of thrombosis, a case is open against the hospital in relation to this.

One of the conditions of acceptance of liability from the hospital was to see Mr Paes a top vascular consultant. I was pleased to see him, to be given the opportunity to see a top consultant in this field filled me with hope, I thought if I was able to see the best he would be able to give me the answers I wanted to hear, to tell me what the cure was, what I could do, what others could do to make all this go away and for me to go back to living the normal life that I did before without any restrictions. I didn't get that. He was very frank with me, and he was able to fully explain what my condition was and for that I was grateful to have the time to ask questions and to be given the truth. He told me my condition is permanent and that I should stop searching for cures. He told me as the damage was in a deep vein that there was nothing that they could do. He told of research in europe where surgeons tried to fix a damaged valve, only to cause a further DVT, and we know the potentially life threatening complications that can come with that. He told me that it was like an incurable cancer and I needed to learn to live with it and not let it get me down.  All very sane, frank advice, but all a bit much to take in and on board.

Those of you reading this who know me, know that I do not dwell on things and no matter what knocks I have had I have always tried to get back up. I had been trying  so hard previously to be positive I was not accepting that this was is, when people asked me how my leg was I'd always reply that things were getting better, if anything to alleviate their discomfort of the situation. But I couldn't run away from it anymore, here was a man who has spent years researching into venus thrombosis conditions telling me that there is no hope.

Now don't get me wrong I am okay, and I am not trying to seem over dramatic here as generally I know I can lead a pretty normal life, but I felt his words take the wind out of my sails and a need to really take in and accept what had been said, my mask of false hope was removed, this was it.

What I think I have found most difficult is the feeling that I am carrying around a ticking bomb. I have Post Thrombotic Syndrome, I have two genetic blood clotting disorders that make me more prone to clotting, I have had DVT and Multiple PE's. My leg swells up if I stand or sit for too long and if I don't do something to stop that swelling to drain that blood I am at risk of clotting again. I wondered is this what I'm going to die of? Will I eventually have a careless day where this just takes over.  I expect we all have things happening in our body that if we don't take care could kill us but is knowing and feeling it a good thing?

The reaction of others can be tough too. "Will you always have to keep you leg elevated?", "Oh thats awful but it will go away right?" "I don't believe thats true things will get better."

I think sometimes it is because people don't know what to say or they don't want to believe it and I feel like I need to say it is all going to go away to save them but it won't.  

If I have learnt anything this last year it is that to truly be able to move on we must have acceptance. Maybe one day in my life time something will be able to be done, but for now I need to accept that this is my life. That I am unable to travel too long on a train, to sit in a cinema without taking a stool, to stand for long than a couple of minutes, to work in an office, in a shop, in a restaurant, to sit at dinner without having my leg up. That when I get married I may need to have a stool so I can put my leg up while I say my vows (it'll certainly be memorable!) But having said that I am still here, I could have not been and there is so much that I CAN do.

My next stage with Thrombosis Support is writing to two local hospitals and my MP to get the support groups set up.  I am lucky that I have an amazing man who I can speak to about all these thoughts, a therapist and a great group of peers at college (I'm training to be a therapist).  But so many people don't have that. When I went in to have knee surgery I was a healthy independent young woman with a bit of a gamy leg. Fast forward two and a bit years and everything has changed. I needed that support group, I still need it. I have good days and bad, living with a chronic illness can be debilitating, and from the stories so many of you have shared Thrombosis can have such a huge impact on life, it can take it away mercilessly and fast with no explanation leaving grief stricken loved ones. We all have times when we need support and I want to be able to provide that. 

HELP ME, HELP YOU, HELP OTHERS HELP THEMSELVES

Meetings and bank accounts & charity gigs!

So I have been busy meeting with people and putting the wheels in motion for Thrombosis Support.

I am very excited to announce that the Thrombosis Support Bank Account is nearly up and running, just need the ID of the signatory's approved and then we are good to go- I have already raised nearly £200 for Thrombosis Support which is amazing and soon once we are all registered with HMRC I will have our Just Giving page up and running and then anyone can fundraise!

The £200 already raised is going to go towards setting up the website, the forum and the start of the support groups.

Thrombosis Support is here to support and help those affected by Thrombosis be it themselves or a loved one so I am very keen to get input from you about what you want Thrombosis Support to be.

I will be looking for people to be trustees and to be involved in Thrombosis Support so please contact me via our facebook group or leave a comment on the blog if you want to be involved.

I had a very useful meeting with Allan Pimentel a Psychotherapist and Deputy Director at CCPE about setting up Support Groups, he gave me lots of information about the effectiveness of support groups and how to format them etc. Next stop is meeting with the local hospitals and I am in the process of creating a questionnaire that I want to be readily available for patients at their anti-coag clinic regarding after care and again trying to find out what those affected by thrombosis need and want in the way of support.  I know I felt very alienated when I first was diagnosed and needed support and guidance.

Next on the agenda is a Charity Gig, performing is my first love and I am blessed to know some very talented people, so watch this space for info regarding this.


Help me, help you, help others, help themselves

DWP appeal......done!

So it has been a busy couple of weeks with some very positive outcomes and lots of things happening.

As I have vented a little previously since having a thrombosis, I have really struggled to get any support from the Department of Work and Pensions.  In January of this year I began to try to go back to work, I love working, I am a workaholic and rarely have just one job, so not being able to work due to the DVT & Pulmonary Embolisms was killing me. I live with Post Thrombotic Syndrome and while I have to be careful and I do have limited capability I will not let it stop me from working and getting on with me life. Anyway January this year I started back at work, in the second week I ended up back in hospital- I tried to do two 8 hour days at a desk, leg slightly elevated but it was to static, my leg was so swollen and painful it took two days for the swelling to go down.  I had tests in the hospital as they suspected another DVT, but thankfully it was just swelling due to PTS. I reduced my hours and kept trying.  In February the DWP requested I go for a ATOS work assessment, to assess my capability for work and my eligibility for Employment Support Allowance. Since my surgery and subsequent DVT, PE's and now PTS I had received no help , no support. Prior to this I worked I paid tax and national insurance, INSURANCE, which I thought was for when due to no fault of your own you couldn't work full time.  The assessment was a joke, I was told I did not have limited capability for work and was entitled to nothing, did they not know me? If I could work full-time I would, I was really trying to get my life back on track and just wanted some support, some help, not only where they not helping me, but they didn't believe me- what did they want, for me to stand there and then they could watch my leg change colour and swell up!?

And so began the fight, the letters to the DWP appealing, letters and meetings with my GP, my physio, my employer, my consultant- I had to pay for letters that provided evidence of my condition, even though I have a medical certificate that states I can work only part-time and with limitations. In April I increased my hours and again in June. According to the DWP you are entitled to Employment Support Allowance if you have limited capability for work due to disability or illness and can work up to 16 permitted hours. As of June, I am now working more than the 16 hours permitted hours. Frankly I think this system stinks, when you are gradually trying to get back to work you can't go from 16 hours to full-time, I think it should work on a tiered scale, work up to 16 hours get x amount up to 20 get x amount up to 30 x amount and then above nothing or something like that- but it doesn't.

Along the way I have kept the DWP informed of my condition, of my working hours and have asked on numerous occasions if there was any other help I was entitled to, or could apply for, I got no information.  My case was going to tribunal. I have been struggling but getting by, on so many occasions I thought of giving up, and just getting on with it, but I just couldn't let it go, it felt so unjust, how can they even comment on my condition without understanding it? they don't live it, they don't have to sit with their elevated, they don't get pain from a simply train or car journey, from sitting down or standing still for more than 5 minutes. So I kept fighting and I am glad I did.

On the 7th July at 3pm I had my tribunal hearing at Bexleyheath Tribunal & Courts office. Honestly I was really nervous, I knew I was totally in the right, I had been honest about my condition and how much I could and had been working, I had all the evidence, but I still felt sick in my stomach. I was glad it was coming to a head though, the fighting, the constant letter writing would after the hearing be over. I went into a room with a Judge, a Doctor and a Clerk. There was nobody from the DWP there, good I thought. They had all my evidence, the Doctor asked me a couple of questions regarding my condition, and my limited capabilities, then asked me to leave the room for 5 mins. I came back and there was a letter on the desk, they told me they had made their decision and that they would write to the DWP. I took the letter and left.  The letter read:

The Appeal is allowed
Miss Johnson has limited capability for work
Total 15 points meets the threshold for an award of ESA




I smiled the biggest smile I have smiled in a long time, they believed me and I was right, I don't think I have ever felt happy that I have limited capability for work, when I first got the medical certificate from my Doctor telling me I had a permanent condition my heart sank, whereas on this appeal notice, I felt accepted, recognised, visible. I left feeling a sense of satisfaction, I went home read the small print and the DWP doesn't have to pay me any back dated benefit. I am contested 3 months of ESA, I really don't think they will not pay up, I certainly hope not, but anyway I won my appeal and that is what matters.

Let's get things back on track.......

So, it has been a while since I have posted anything, the last couple of weeks have been crazy busy.

I finished the 31km for Lifeblood and after it was pretty exhausted, thank you to everyone who has donated so far, I smashed my target for Lifeblood and have raised £1070- let's hope it continues.

I then was able to tread the boards again. Prior to my knee surgery and subsequent VTE episodes I performed on the stage and this was something I didn't really think I would be able to do again- I performed in the Come Dancing Concert at the Theatre Royal Stratford East, it was great to be doing what I love again, I apologise to all those in the cast, especially in the girls dressing room who had to deal with me sat on the floor in the interval and between shows with my leg shoved in the air trying to drain the blood! My post thrombotic syndrome was hurting but it was certainly worth it and I was sensible after the show and kept active and my leg elevated. The post- show blues has just about subsided and I am able now to focus again on Thrombosis Support and what I want to do moving forward.

I have been lucky enough that alongside my fundraising for Lifeblood I have been able to raise a little money for Thrombosis Support, which will help greatly towards setting up the website, forum and local support groups- you can also donate on this blog if you feel able to and I must say a big thankyou to Sonya Raymond for her generous donation today.

As I have previously said I want Thrombosis Support to be for those affected by Thrombosis and so welcome any input. My aim is to provide support, via the web, forums, information, local support groups, support grants etc. to those affected by Thrombosis, it changes lives, and unfortunately takes away lives and I know that there is a need and want to offer support.

If you have any ideas, thoughts, wants, needs related to this please contact me either leave a comment on the blog or request to join the Thrombosis Support Facebook Group

My next few tasks are the forum, website and contacting local hospitals about setting up support groups via the anti-coag clinics- I shall report back on my progress.

Thanks for reading!

Help me, help you, help others, help themselves