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
i'm sorry to hear you're back in the hospital. i hate thinking you might spend xmas there. sending you prayers and warm hugs...
ReplyDeletexoxoxoxo
Hi Odette,
ReplyDeleteits been a looong im hey since we had a catch up. I try to keep upbeat, things are heavy at the moment drs have been organising oxygen for my parents house fo me all day to ensure i am safe and have enough supply for journeys round the town plus getting to my folks an back again if i reduce my oxygn by half what i am on i still need around 980 litres just for travelling and that with a conserver... legistic nightmare. then got the thought that i am wheelchair/bed-bound atmoment so cant do stairs all family have stairs so gonna have to sleep downstairs i think, bathrooms are upstairs but thank god im catheterised!!! its not exactly a stress free christmas still got no presents either so when i escape tmoro, firstthing on list for friday is shopping before travel back...... then sleep-lots of it till the big day :-) needing the oxygen at all time now tho and family finding it hard to accept thinking i can will myself better if i want to - id love to but think that God has a plan here somewhere i just have to learn to be patient and await what he is gonna do trough my life. thats my belief anyways. so cant be miserable just got to wait and see what He has planned for me.
all my love to you and your family this holiday season nda happy new year to you all, all my love always Rattles XXXXXX