Systemic Lupus Erythematosus

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Systemic Lupus Erythematosus
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    Community Voices

    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

    How Hospital Rituals Can Create Familiar Rhythms for Kids and Adults

    As a chronic illness patient myself (lupus, ITP, Hashimoto’s, fibromyalgia), I have learned a few tricks about making hospital stays bearable. Let’s just say thank God for that because my 10-year-old is in the hospital right now with a terrible ulcerative colitis flare. Life for a 10-year-old should be all about playdates, enjoying food, and creating in Minecraft. It should be consumed by learning and laughing. But, as many of us know, the chronic illness life can take a toll on the most resilient of adults, and it can also be equally challenging (albeit in different ways) for children. Creating rhythms of familiarity has been helpful for us in our hospital stays. My hospital rituals help keep me grounded, encouraged, and most importantly, help me pass the time to be able to get through each day. Hospital rituals for me look like making sure I take a walk each day to my favorite coffee cart. It means packing the same pink pin-striped toiletries bag that my friend Heidi sewed. It means being sure that I take my big hoop earrings and my favorite book with me. For my children, it looks like a continuation of our homeschooling and rhythms from our life. For my son, it starts even on the long drive to the hospital. We always listen to an audiobook (we have them ready in the car). This trip, it was Roald Dahl’s “The Twits.” Our in-hospital ritual looks like packing and playing a particular card game we love. It means making sure we have his special monkey toy in his bag. It means being able to log onto the Minecraft server so he and his sister can play remotely and feel connected. It also means grabbing a Famous Five or Secret Seven read-aloud and enjoying that with a cup of tea before bed. It means making sure we whisper our “I love you’s” still in the dark once we have turned out the lights and there’s nothing but the nurse call light left illuminating the darkness of the room. It might not sound like much, but these little rituals help remind us of the familiar, which in turn helps us remember who we are. And if we can do that, we can manage one moment by one moment, which in long hospital stays is a real game-changer.

    Community Voices

    Hello -- Lupus Is A Journey

    <p>Hello -- <a href="https://themighty.com/topic/lupus/?label=Lupus" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce9700553f33fe996d9b" data-name="Lupus" title="Lupus" target="_blank">Lupus</a> Is A Journey</p>
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    Community Voices

    Enough never feels like enough

    I know I do my job well, I never take vacation because I use vacation time as sick time, with some FMLA, I always get good reviews, but whatever I can’t do, whenever I can’t do, I just feel like I am not enough cause of these conditions. I work with people with disabilities and in some ways I feel more cut out to understand and to advocate , but also just less able to be there. It’s hard to believe I am doing enough with how much I have to care for myself
    #Lupus #SystemicLupusErythematosus #ChronicIllness #PsoriaticArthritis #ChronicFatigue

    Community Voices

    New here, but not new…

    Hi everyone. My name is Jamee. I’m married with 1 son, and 3 stepdaughters. I suffer from several chronic illnesses including Lupus (SLE), Multiple Sclerosis, and Autoimmune Hepatitis, along with a few more. I also have Major Depression, anxiety, and PTSD. I’ve been a member of The Mighty for a while, but rarely post. I want to get better at that, and I plan on posting more. Looking forward to getting to know others, hearing their stories, and telling my story-there’s a lot to tell! Thanks for reading. #MajorDepression #Lupus #SystemicLupusErythematosus #Depression #PTSD #MentalHealth #AutoimmuneHepatitis

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    Community Voices

    Little vacation for my mind

    <p>Little vacation for my mind</p>
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    Community Voices
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    Community Voices

    Lupus messed with the wrong witch”

    Hi all! This is probably the group I didn’t know I needed! I am a 1st degree Gardnerian. I had been practicing Wicca on and off my whole life when I joined a coven. A couple of years after I was initiated I was diagnosed with SLE and lupus nephritis. My coven, actually, my high priestess, wouldn’t believe I was that sick. I had to miss meetings and rituals due to my treatment, and then Covid came, and I felt like I wasn’t a part of the coven anymore. So, here I am, with a chronic illness and on my own again. I think this group might be helpful to me in light of all that I have been through, and I appreciate your allowing me to join. Blessed be!

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    Community Voices
    oh_su

    Feeling blue...

    Today I feel completely isolated. Without being able to connect with anyone, thinking about my sick body and how this illness has distanced me from the people I once called friends. Just a bad Saturday...
    #Depression #Anxiety #Lupus #Loneliness #SLE

    2 people are talking about this