Lupus Systemic

Hi, I'm Eve. I am from Hatley, Mississippi. I'm new to your site. I usually never talk on the computer but I have now got to the point where, well I guess, I need to talk to someone who might understand. No one understands what this is like. I read some of your post and when I combine them, its like you're living my life. My dad had 2 cousins with lupus. One of them was blind by the time she graduated. She had the kind that affects the outside of your body, skin, butterfly affect, elephant man disease, etc. Very horrible what she went through. The other cousin hardly had flare ups. Didn't bother her much until about 20 yrs down the road. Well, I on the other hand, went into remission and it only lasted about 3 months. I have not went back into remission again. I have so much pain and nothing they give me works. They can't get the pain to quit. Not only that, I had that bladder mesh recall and it really messed me up too. On top of the mesh, lupus, I have osteophenia, thyroid disease, fibromyalgia, palpulations, low metabolism, irritable bowel syndrome, high hernia and a bleeding esophagus, leaking bladder with cystitis (now only part of the muscles to my bladder work), migraines, low immune level, have had skin cancer removed, toe nails falling off and hair falling out, well I think I told it all. Other than all that going on, I THANK GOD, I CAN WAKE UP EACH MORNING TO SPEND ANOTHER DAY WITH MY 9 yr old son. I can't run and play with him like I did my grown children when they were small but I still try to let him know I love him. I praise God for letting me be here with him, even if I am suffering in pain all the time. I just pray I get to see him grown and with his own children. I want to see that so I want let this disease win, not yet anyways.

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  • Welcome to LUpus Patients Understanding & Support (LUPUS) at HealthUnlocked.

    I am very sorry to read your post, but I am glad you have found us.

    How can I help you?

    We also have another website called the LuPUS Message Board where you can also post questions and talk to other people. Registration is FREE and we offer free information and free online psychological support. We specialise in psychological support with our own counsellor/psychotherapist available.

    By becoming a Member, you will have access to the private forums and because they are private, only Members have access and even bots and search engines are forbidden.

    When you register, please use the following format for entering your date of birth: nn-nn-nnnn where n=number. Please use the "-" separator and not "/".

    Finally, please go to: lupus-support.org/LuPUSMB and Sign Up.

    I look forward to talking with you more!

    Sometimes we need to talk to people who understand and who are not family or friends.

    With good wishes!

    Ros

    Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

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