Still here....

Hi there folks,

I am still in the hospital, had to have some antibiotics and now had increase in treatment for my autoimmune vasculitis (which is annoyingly still called auto-immune vasculii of unknown origin....) come on. Please give me a break. apparrently it willbe classed as such until all tests are bak inclding the latest - i haev now got to have nerve conduction studies and muscle biopsies. Once these are back if they concur with the results tatsuggest Churgs it will be that, if they cocur with the results suggestng Wegeners then i will hav that if it concurs with nothing and is still ambiguous i will be labelled with Behcets, which is a disease of exclusion. it usually affects young people in their mid-late teens/20'slike myself with progressive symptoms much like i have had and oftn gets mis-diagnosed as mental health issues for lengthy periods of time until someone finally clicks the zigsaw bit together and sees you as awhole person or you move to a different hospital like i did for a second opinion...


I have a fabulous vasculitic pulmonologist, vasculitic dermatologist and a neuro, an endochrinologist, rheumtology doc and ortho doc who dont specialise in vasculitic disease but who are in the background helping whenever there is an issue with whtever system lol...

I feel much calmer with my current team, my gp is happier we have some reasons/answers to what has been happening as do i, i just hate the unknown element. Churgs/ wegeners can be devestating diseases and very life limiting especially whn diagnosed late on which mine definately has been. I have been reliant on night CPAP (positive air pressure ventilation)at night now and up to 18 hours during the day at times due to the damage in my lungs from delyed diagnosis. I am also reliant on oxygen 24/7 at between 1-4 litres/min which has recently been increased to 8litres/min as an inpatient however ,y concentrator currently only goes to 5 zo thus we begin the ween down which is harsh, and can sometimes lead to a few setbacks but i hope this time will go well.

I am awaiting physio/OT guidance on wheelchairs so that i can get back to my family for the festivities... I stillhave presents to buy too hahaha...its gonna be a busy week/wekend isnt it lol! I am hoping that i cn borrow a decent enough chair from someone without having to hire one fo a small slice of my soul..looking at some prices quoted you have to be loaded to afford a decent enough one its like the old plasticy NHS issue glsses you used to hate wearing as a child, prefering to squint instead lol, thats where i am now except without the chair i can stand/walk and cant get to my folks therefore cant spend christ,as with my family.... i'l get ther just got a few obsticals in the way first.

Once there i have to tryand wear my drs mask lol will tell the nephew thats what it is anyways, gotta o that to avoid any additioal airbourne germs that i could pick up, my immune system is so lethargic now its been hammered with chemotheapy agents and high doses of sterods that a simple cold could overwhelm my system putting my life at risk.

I recently caught a UTI frommy indwelling catheter, it didnt give me a temperature until it was so bad i had pus in my urine.i then got a temperature, rigors andfelt dredful. soooooo i my feel finebut cannot get complacent with i all at all... i will obvioisly kiss the boys goodnight and give them cuddles etc but will hve to be careful how long the mask is offfo to prevent any unwanted infetions as i definatey dont want to end up at my paents local where they dont know me...

so sortin out the dottng of the i's nd crossin of the t's at the moment its time consuming and at times far to political(i spread across2 primary care trusts of which neither really wants to fund my various treatments...)thats before we ask themfor a very specialised Behcets drug usually ued in B and T cell lymphoma/leukaemias.... its a tricky situation.

On the homeward straight now icam see the light at the tunnel end, so herecomes christmas.... mum/dad, stick my stocking on the wall lol!!

Speak to you al soon I may have results of muscle biopsies andnerve condution by then you nevr know stranger things have happened at sea as they say so i will bid you all a fond farewell for now, and wish you all wherever you are and whatever you are doing a very merry christmas, and aprosperous, happy and for lot of us hopefully a healthier new year.

Allmy love to you all this christmas,
Rattles Xxxxx

Well, well, well.... when random symptoms equals very bad news...

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