Hi All,
Recently I have been bed-bound and struggling a lot with painful joints muscle weakness and ulcerations, all this coupled with worsening chest symptoms and kidney issues etc.... I had several blackouts, respiratory and cardiac arrests etc.....
All since my last post. Well. I am again in hospital after another fight to beat an unknown disease slowly damaging/killing my organs, I have met some amazing people through a small charity called Vasculitis - UK (Stewart strange trust) which is great. If anyone can support this charity even sending a penny will help.
Trying to run a charity helping desperate people and all by volunteers, every penny they get goes into helping people with leaflets and info, as well as that all important research. I am a biomedical scientist my main area of expertese being haematology.. once I get some health back if i can use my research brain to help others like me answer the most important questiom of all (apart from am i gonna die...) is Why me? There is a possible genetic link. I am now determined to get som recognition for this... Lord Robert Winston just happens to be the chancellor of my uni, I think a letter or two to him about my and other like me's situation may be in order..... it may help - he coud getthe uni to research into links as heis a genetisist after all!!
Anyways i amreally tired. condition is wearing me down and I cant start my chemo until i have got rid of my infection. I am currently in a side room and onlycertain people are allowed to visit which is just unfair.... hoping infevtion will soon go and then i can start my chemo nd start kicking this diseases butt!!!
Will write another post tmoro if i can about what its like living with what feels like another person (to use a friends words a siamese twin) pulling you in one direction whilst you wanna go somewhere else... I will explain that another time - its just very very draining.....
Hope everyone else is well and doing ok,
lotsa lv Rattles XXXXXXXX
Acceptance
10 years ago
