My Name is JJ Kane, I have been living with mis diagnosed Lupus for over 30 years ( i Know that makes me sound old ) I lost both my knee caps to it after 11 operations on left leg and five on the other. I was in constant pain and was on palliative care for many years. I was in a wheelchair , constantly fatigued, rashes on body and butterfly rash on face . I now have sjogrens, raynauds and ME with possible MS.
It is taking long to get full diagnosis , I am about to loose my house due to missed payment on mortgage, I am self employed and thankfully I can do some work from bed ( when I am awake) I have had to move out of family home where I have a beautiful 12 year old son because I didn't want him seeing me so ill all the time and at least he has a childhood. Remarkably he understands and calls my conditions the chronicles of Narnia :0)
His father has never worked , but at least he is there to care for my son. I still have to pay for everything and it is getting more and more difficult everyday. I now have lesions in mouth and my throat . My ovaries are being attacked and and my mental health and cognitive skills are suffering. Also my teeth are turning to rack and ruin and my hair is falling out.
The one thing I do have is a fantastic GP who deserves an MBE , and the other thing is I have is determination and the desire to research these horrific conditions that lay us up for weeks, months sometimes years at a time.... I have to teach consultants what Jessner's lymphocytic infiltrate is and Lichen Planus which is another delight I have just developed.
I am 46, and feel 100. somedays I want it too end , just slip away , then another day when I manage to get up for an hour and take my camera out I thank god I am alive to see my sons smile.
Thank you for letting me share this with you , and I wish us all a pain free week ahead ......
someone pass the fairy dust :0)