Living with the enemy

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)

8 Replies

  • I could use some of that fairy dust. sound very brave to have been through all that, I think its our children that get us through everyday, I know that my 11 year old does... makes mw determined to get up and do the most simplest of thi things. I think you are just what I needed today, thank you for speaking your mind and making me realise what a good life I have. ..take care... xx Uzi xx

  • If I had some I would pass it around ;0)

    Take care, try to keep strong, and if all else fails there is always Wimbledon this afternoon or take a nap xxx

  • I don't if this is a good thing or bad thing Wimbledon is just down the road from me. .total madness to venture out so the telly it is...and popping into the garden centre....have a nice day. ..xx Uzi xx

  • Poor you unfortunately this horrible condition effects us all so differently! Take rest when your body tells you and keep being brave! I found a 4 leaf clover yesterday the wish is yours on it! Xx

  • I'm 50 and feel a lot older and like you I am also a photographer and find it more and more difficult to do which frustrates me so much as for your son don't hide your illness from him children are very resilient and adapt as we have to and he will appreciate you more not that he doesn't now. Big hugs and lots of wellness wishes xxxx

  • Im just beginning the journey with lupus..i have had the hypothyroid thing for a while, and chondrocalcinosis (psuedogout)....Its mild for me so far...I know tiredness though.

    I wish you love and hugs.


  • I need some fairy dust please, I'm struggling this week, but hey keep ur chin up us lupus people have to stick together and encourage each other every day, keep smiling :) and don't let if beat u although I know it's hard xxxx

  • Hi JJKane, one amateur photographer to a real one. ;-) I am new to it as I have tweaked my life recently due to having to take different paths when one finger came out of one pie I put it in another - so to speak. So looking at the beautiful places around me I thought I'd make the most of it as some friends of mine were starting a photography club.

    Like you I am 46 and my body is feeling older but I am still twenty one between the ears ;-) on a good day. I know what you mean about how difficult it is being a Mum and having health issues my children have been registered as my carers since they were three and five, they are both adults now and have seen much more in their lives than many people our ages have.

    I do feel for you with your physical difficulties, I was in a wheelchair for a while but luckily had surgery and am walking again now. The issues you have had with misdiagnosis then finding a correct diagnosis must have been so stressful whilst having all the social aspects going on with housing and home life, I have been there and come through it I sincerely hope that you get some good luck and manage to come through a stronger person as I have. Ditto Uzi speaking our minds does get us through as does the love of our children, that's why I love this site it has proven to be a damned good shoulder to cry on sometimes...... as a manner of speaking and given me some very useful information. It has been great meeting new friends who really know what I feel like. I hope we can help you the same way this sight may prove to be the sprinkling of fairy dust that you are looking for just to help you smile today it helps me sometimes.

    Chin up sweetie and good luck fellow lupie

    Madmagz x

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