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

Final Video blog showing my journey to 31km!

Day 5 Fundraising done!

So I have done it- I have completed 31km in 5 days for Lifeblood, the Thrombosis Charity.
I am so pleased to have done it, I am super tired. Here's how I did it:


Monday
Cycling 6km
Running 1km
Swimming 1km
Total 8km


Tuesday
Cycling 5km
Running 1km
Total 6km


Wednesday
Cycling 5km
Running 1km
Total 6km


Thursday
Cycling 5km
Running 1km
Swimming 1km
Total 7km


Friday
Cycling 3km
Running 1km
Total 4km




I am off tomorrow to Kefalonia for a long weekend break to see my cousin, a well deserved rest I think.  When I get back I am going to edit together my video blogs into one to show my journey and try to get some more sponsorship. Thank you to all those who have sponsored me so far.


If you are able to give anything, even just a £1 please please go to my page, www.justgiving.com/johnsonkatherineelizabeth.

Day 4 27km done! me swimming & everything!

So it is the end of day 4, and I have covered 27km of my target 31km in 5days for National Thrombosis Week, for Lifeblood.


Today I have been overwhelmed by the generosity of people, people who I have never met, who don't know me, he know me only as James' partner. Thankyou, Thankyou, Thankyou. The money you are donating will help Lifeblood to continue to do the amazing work raising awareness of Thrombosis. This is just the beginning for me, I am so proud that I have been able to achieve this, I know I haven't finished yet, but I also know that I will. When I was in the hospital, when I was in the wheelchair I never imagined that I would be able to cycle, run, swim, so that I am doing it one year on is amazing.


I am going to be setting up Thrombosis Support, an organization that works primarily to support those affected by Thrombosis, emotionally, factually and financially. That is the next project, there will I am sure be more fundraising to come for that, and I have certainly proved this week that I am able to do something. I have set up a support my blog tab, at the top of this blog, if you are able to give something, I would be most grateful. The next step for Thrombosis Support is the website & forum and this costs. 


Please help me, help you, help others, help me


Thanks for reading

Day 3- Tired, but still powering through

So I have just got back from the gym, and I have done 6km today so am still on target for my 31km in 5 day challenge.


Whilst in the gym I was doing my strength exercises,stretching and listening to Jessie J 'Big White Room', it brought back lots of memories of being in hospital, of laying in the hospital bed in so much pain, not being able to breathe, not being able to walk, not being able to be me.


I have come on so far from those days, and I can't even believe it was me, it feels so unreal. For any of you who know me, and saw me in that hospital bed, or pushed me in my wheelchair, who helped me try to begin to walk again, who have been the support for my leg when I have needed to elevate it, look at where I am now, please help me to give back to Lifeblood so this doesn't happen to someone else. DVT's & PE's are preventable and treatable, I am lucky I am sill here, so many people don't get that chance. For those of you who don't know me, and are reading this blog, firstly thankyou. I am just one person trying to give something back. This week is raising money for Lifeblood, moving forward I want give support to those affected by thrombosis. If you have been affected by thrombosis please contact me, tell me your story, tell me what you need, what you think will help. I am full of ideas, and I want to make these a reality.


Help me, help you, help others, help me..................