My History Is Complex - And I Have Been Ill

my history is complex - and i have been ill a lot over many years - but believe me i am a fighter - and hate illness affected my life -

that aside SLE is a confusing topic - I get flares that i can mostly control - I have noticed over the last 6 months they are worse.

The NHS is the uk, is limited - and I seem to understand more than even my lovely RA specialist - I will not give in, and hate that doctors can see me only as "not much we can do" I don't believe that -

ok - history = healthy as a child = athlete healthy home food etc, at the age of 12 started my periods - nothing drastic all fine - then got severe headaches and migraines - always said I could pinpoint them to an area ... nobody listened - had glangular fever at 13 for a whole year couldn't move - finally have an mir that showed a sizeable heomangiomioblastma attached to many important brain functions.

At 13 I was told that I can either have brain surgery to try and remove... or have pain management... for 3 years I took heavy pain relief... It never eased.

I had polycystic ovaries, but fought, stopped the tablets - was told would find it impossible and dangerous to have any children.... eat well - and went to the gym young and determined went cold turkey on 3 differant heavy duty pain and near tablets ( this isn't me bragging - is medically important and I want the most out of this )

I put up with the pain, causing me to lose all feeling in my hands and legs for 6 months - eventually after a year we started to try - within 1 week I was pregnant.

The pregnancy was fine - In fact I felt better - I gave birth - under medical advice - through an elected c- cection. all was well till 1 month after when i was in agony- thought it was food poisoning- went to a and e - they rushed me to gastro - I have a colonospy without pain relief - and was told i had UC to the point that there was nothing really left to save - I had 6 months of steroids to stop - lost 3 stone then was told that its not saveable - I had a total colectomy then a year later a ill-anal pouch- all was fine after a few years etc -

i was about 27 and noticed I could not lose weight after the steroids and my joints really hurt

at 29 it got so bad I was sufferling up the stairs - I couldn't walk far - I felt 90 ! and considering I never had acne - I had spots on my face across my nose.

the hospital put me on nuproxin - hyrdocloracloiquine - and nasaids - i felt terrible - I fought to get physio and trained hard - nuproxin made me upset and anxious - nasaids make it worse came off both.

every day i wake feeling I'm dying, queasy, stiff( doesn't cover it ) I have to slowly stretch every joint ... in pain to work ... If I get up suddenly - the pain is through the roof -

recently My vision is more blurred- I cant go into light I need sunglasses ( no i don't have meningitis )

I have no power in my body - I get brain fog constantly - nose bleeds - loss of appetite - weight loss, very very large purple bruises etc

don't fob me off saying these are red flags - I know what they are - I am still here because I don't give up - and I don't just pump in unessacery drugs- I take what is nessacery - I seem to have chronic vasculitis- I am not looking for a cure I am looking for help to survive and carry on - I need to understand why the headaches are back after ( sorry forgot to tell you ) my lifestyle (only thing that changed) shrunk the tumour from a peach to a grape over 3 years . why are the pains back - why am i losing weight - rash on face is bad - I am loosing hair - i suddenly have vertilito but dr doesn't know what to do "just lupus"