Systemic Lupus Erythematosus

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Systemic Lupus Erythematosus
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    Me

    Hi. My name is Trisha. I would love to be a friend to you. I have had SLE for 14 years. I also suffer from depression, anxiety, fibromyalgia, Sjogrens and Raynards Syndrome. I am a mother of three children.

    4 people are talking about this
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    I'm new here!

    Hi, my name is dgn123. I'm here because
    I have SLE Lupus #MightyTogether

    2 people are talking about this
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    Community Voices

    In My So Called Lupus Life

    Hi! My name is Rhonda and I am new here. I am a 52 year old punk rock poet and spoken word artist, working in homelessness, and have been diagnosed with Systemic Lupus since I was 16. I have been given 6 months to live many times. I am looking for an online support system to discuss the challenges of having such a torturing chronic illness. #Lupus #SystemicLupusErythematosus #ChronicIllness #punkrock #MightyPoets #Poetry #Homeless #homelessness

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    Next step kidney biopsy

    Doctor's have been back and fourth last few years with lupus diagnosis took meds for a year then they said not lupus. Over the last six months I have trouble keeping weight up. Went back to doctor lots of tests. Now calls me with SLE diagnosis and have to have kidney biopsy. Frustrated with all of it. Never knew mouth sores were a symptom of anything. They ask about joint pain but after a car accident about 6 years ago neck fusion back fusion nerve damage. I just got used to pain so can't really say anything is different. I guess I'm asking with SLE diagnosis can I live full life. I know kidney function tests showed wasn't working properly. Just wanting a little advice and maybe questions I should be asking doctors.
    #SystemicLupusErythematosus

    3 people are talking about this
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    I'm new here!

    Hi, my name is Foxi74. I'm here because
    I am looking for something or someone to help me navigate through SLE (lupus) I was diagnosed this year and it's been pretty much hell on earth for me. I feel alone with this chronic disease, and I don't always know how to cope. #MightyTogether #Fibromyalgia #Migraine #Lupus #Anxiety

    6 people are talking about this
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    Hi, I am new here.

    I am mostly doing ok. I have a compromised immune system so I have been self isolating since Covid started. I have lupus sle, fibromyalgia and narcolepsy. I am struggling with the desire to just be “normal” again. I never thought I would miss seeing people! It got worse when I was in a motorcycle accident. Both of my shoulders were broken and now there are a lot of things that I struggle to do physically. The accident was in June of 2020 and I am still in physical therapy. Luckily my right side wasn’t damaged as badly as my left. I have a plate and ten screws on the right, and my left shoulder is titanium now. My left rotator cuff was pretty well mangled. I have about as much range of motion as I am going to get. I am still working with one and two pound weights. I’m just feeling a bit isolated and whiny.

    6 people are talking about this
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    I’m new here!

    Hi, my name is africa. I'm here because I have recently been diagnosed with Systemic Lupus and am looking for support from people with the same condition.

    #MightyTogether

    1 person is talking about this
    Community Voices

    MCTD warrior - having it all, but not what you want.

    <p><a href="https://themighty.com/topic/mixed-connective-tissue-disease-mctd/?label=MCTD" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce9d00553f33fe997fbb" data-name="MCTD" title="MCTD" target="_blank">MCTD</a> warrior - having it all, but not what you want.</p>
    29 people are talking about this
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    What Next, Loki?

    I've always considered Lupus as a disease that was designed by committee -- with Loki running the meeting.

    But lupus isn't my issue today.

    In my home, my wife and I take turns taking care of one another. She's been through 19 major abdominal surgeries since 2003, courtesy of a hack surgeon doing surgery #1 . All the rest have been attempts to put her back together.

    Even with my SLE, I'm actually the most mobile and healthy person in our marriage.

    Two months ago I started the journey of determining if I have some kind of cancer somewhere in my lower bowels. The slowness of the process is ...unpleasant.

    Then, last week, my postmenopausal wife started bleeding. Just got her super invasive ultrasound today and the tech was two parts evasive and all parts concerned due to anomalies in the images.

    So, there's a potential for both of us going through cancer treatment simultaneously. Can you imagine the gimp-fest that's going to be? It'll either be a tragedy or a farce. Maybe I'll write it up once we're on the other side of all this.

    I'm less than pleased. She's terrified. And we both have to wait for final answers.

    Loki....is a prick.

    1 person is talking about this