Systemic Lupus Erythematosus

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Systemic Lupus Erythematosus
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    Interview

    Hi everyone,

    I'm 22 and was diagnosed with SLE this past summer after dealing with Raynaud's, poor circulation, and fatigue (that I mistook as depression/laziness) that progressed for over a year. More recently, I've been dealing with long-lasting migraines, brain fog, and dizziness that's been affecting my ability to read/drive. Because I'm still figuring out how to deal with this on a daily (and because I'm a writer getting my MFA at Virginia Commonwealth University), I'm I'm interested in doing a creative nonfiction piece for publication centered around how people cope with their symptoms/treatments.

    I was wondering if anyone in this group would be open to chatting with me for about 30 minutes over Zoom to talk about their experience with lupus? Because SLE has significantly impacted my mental health, it would be great to speak with others who have that shared experience, but if you're mentally vibing and jiving and just want to talk physical symptoms, that's okay, too!

    If interested, you can respond to me here or email me at weissmanan@vcu.edu.

    Thank you,

    Allison

    3 comments
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    Just signed up for online therapy. First session Tuesday! Hoping to gain tools to cope better. Having a chronic illness is not easy and I freak out whenever I experience a new symptom. I have sle and had a recent flare that scared the shit out of me. This is going to keep happening if I don’t work on myself, so here is to a better me :)

    1 comment
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    I’m new here!

    Hi, my name is Jodi_jafo1231. Curious to know how many SLE folks are able to continue working fulltime? I was diagnosed last fall after several years of mystery issues :( I’m really struggling and wondering if I’m just lame or do others struggle? #Lupus

    2 comments
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    See full photo

    You don’t have to be the same person you were at 17

    I’ve been feeling very nostalgic for the person I used to be. The people I used to hang out with, my old friends, my old life- before the diagnosis’s, before my world was turned upside down.

    But the fact is that no matter how hard I wish to go back to that person 9 years ago, I will never be 17 again. I will never weigh 110 pounds again, and friends fade over time.

    The truth is that life moves on and we have to find a way to move on with it.

    9 years ago I was a 17-year-old, happy-go-lucky girl without a care in the world. I had the world at my finger tips. And then I had my first manic episode- I lost friends, family, scholarships to colleges. And then I was diagnosed with lupus- I lost the ability to walk- walk. I never thought, in all my life, I would lose the ability to walk. I gained over 60 pounds from meds, and my lack of movement, and yes, poor dietary habits. But I did learn to walk again (praise!).

    And I will never be 17 again.

    This is who I am now.

    I am 26 years old now. And I live with bipolar 1 disorder and lupus.

    I’m slowly but surely learning to live again. Learning to smile again. And learning to be the happy-go-lucky girl again.

    I believe in her. I believe in me.
    #BipolarDisorder #Bipolar2Disorder #Bipolar1Disorder #weightgain #Lupus #SystemicLupusErythematosus

    1 comment
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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 comments
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    I'm new here!

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

    2 comments
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    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

    3 comments
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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 comments
    Post

    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 comments