Pleurisy & Parliament

Sorry I have not wrote for a while but quite a bit has been going on. Had a lovely Christmas but did end up in hospital for a day with suspected pneumonia and pleurisy. Managed to be discharged two days before Christmas on antibiotics and bed rest.

Found out the evolve study i have been on for the past two years for hyperparathyroidism is coming to an end soon and so not sure what is going to happen to me but before the trial started i was not entitled to the drug needed to control this and therefore not sure if i will be now. If not it will mean i ill need a parathyroidectomy which worries me alot and therefore am hoping and praying on being allowed the drug.

Myself and Chris recently travelled down to London to the seminar at the Houses of Parliament with regards to the funding of the drug Eculizumab. It was really great to see such a great turnout of people and to hear the different personal views, opinions and stories. It was heart rendering to hear these stories and brought back so much of my personal experiences and i felt very proud of the friends i have made listening to them give their speech. 

We just have to keep on publicising the epetition now and wait till june for the outcome.

In the meantime we are attending another seminar in Solihull on Saturday to talk about the patient family and support group. This is an important time for aHUS research and its patients and family and therefore there is lots going on which me and Chris are trying to get involved in, will let you know how we get on.

Over the last  few weeks i also got a letter from the DWP telling me i am apparently fit for work and needed to attend an interview to see what they could do to get me back into work....well you can imagine how infuriated i was after taking 4 years of deciding to take ill health retirement from a job i loved and having 3 independent assessments that i shouldnt be working.

I attended the interview and the lady couldnt understand why i was there either!!!!

I asked for a reconsideration to which it was declined and so now i have to appeal.....i swear i now complete more paperwork than when i worked for the inland revenue!

Anyway with so much going on i feel i probably have become slightly depressed at the moment which is very unlike me as i try to be a positive person. Luckily because i have such a fabulous family im hoping this is just a phase and things will change soon.

Thanks for reading

TTFN

XX