I dont know everything but i know a small bit

Hi everyone. For those of you who have lupus. You will never know everything about it. My mother died of lupus at the age of 44. She never. Drank.smoked. lived a normal happy life. My mother was good when i last visited her in hospital. And eithin 36 hours of bern given diamorphine she was gone. I feel my mother. And family have been let down. Always remember. Doctors. Proffesors. Dont know enough about this disease. Therfore they dont know how to cure it. In my case the cure was my mothers life

9 Replies

  • I am so sad to read this, May your mother rest in peace

    My thoughts and prays are with you


  • So sorry to hear about your mom. I feel really afraid at times but know it is not in my hands so I just have to have faith and trust God in this. It scares me that doctors don't know enough about it and have to just give you some kind of medicine which is not always the best thing.

  • I dont want to scare anyone. It took me a long time to accept what had happened. I lost all faith. Which i did get back tenfold. Never. Lose your faith. Most times its all we have

  • So sorry to hear the vey sad loss of your Mum, I am 46 and have been diagnosed since i was 21 and in the past year have had to fight for my life as the doctors hospital staff do not no enough about the illness i have to carry a care plan with me and have to insist they follow it, Unfortunately this year alone i have had 3 respiratory arrest through wrong medication, I am very scared when admitted to hospital.

    My thoughts are with you .x

  • There are do many do and donts about lupus. With an ilness like this. Giving wrong medication id not acceptable. So many donts happened with my mother. She once cut her finger.she was given a tetnus jag . that is wrong a jag brings the lupus on you should be a tablet. There are so many things i would love to share with people to give them a little bit of knowledge. My mothers story is soul destroying. If i can help by answering anyones questions. I will do so as best i can. Remeber our organs work together.dialasis helps our kidneys. Which may also help your respiatory also.anything is worth a try. I hope all goes well. 💐

  • As long as you stick to the diet you have. Certain foods you should not eat. Always take your warfin. You can live a normal lufe on dialisis. The more i read the more angry i get. About time lupus was recognised as a life threatining ilness. Hope you get better soon.

  • Oh my word. My husband and I read your sad story this morning and we both have cried. Can,t get it out of our heads and I can't tell you how sad and how much we are hurting for you and family. Yes u are correct, so called medical professionals really aren't,t capable of handling lupus. I've had for 30 yea s since my early twenties, I,m now 53 and virtually blind thanx to the idiots who had me on chloroquine for years, I have barely any skin left on my nose thanks to same idiots giving me steroid cream every day for years and even worse I now won,t go anywhere whatsoever, not even to visit my family and I have an elderly unwell mother, because twice I popped along to my local shop and because my facial area is such a mess I was cruelly ridiculed, now resulting in me never never wanting to be amongst people, I only walk my dog and then I keep my head down.

    I will never stop thinking of you, always with sadness and huge feelings of rage against DOCTORS, CONSULTANTS AND PROFESSIONALS.

  • My heart felt pain goes out to you, no one deserves to live life like that.

  • Thank you for replying with the way lupus has affected you. It breaks my heart to hear what you are going through. I cant get my head round how long you suffered lupus. Also angers me that health system have allowed this to happen. You should never have been given steroid cream. And thats just one thing. There was one time my mother cut her finger had to goto hospital for tetanus. They gave her a jag when it should have been a tablet. This brought the lupus even more to the surfise. She end up in hospital as far as im concerened my mother was used a guinea pig. A vet will not put a dog doen unless he has too. Yet proffesors n surgeons ( who know nothing) take it upon themselves to play God. I could go on and on. You are in my thoughts and dont always agree with doctors. Always get second opinion

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