Welcome to Lupus.net Stories

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At Lupus.net, we believe that we are stronger together than we are alone. Living with lupus can be a challenge, but the more we share and support one another, the better off we will be. Whether it’s your own story of how you manage lupus as well as manage complications, to tips on daily living, we want to hear from you!

So please submit your own personal story about lupus, and check back often to read about the stories others in the community share. We hope these stories become a source of inspiration and support for our community.

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lizzyg Member
I'm 40 yrs old. Living with Lupus and fibromyalgia. It took almost two years to diagnose me. So I've known I have Lupus for almost 7 years now. It has caused me unable to work. I can barely keep house work up. My only son that is 11 now lives with his dad at his grandma house. I raised him from birth to 10yrs old. Now it's hard. To keep up and do it on my own. I've lost m Life it's scar my body all over. My skin constantly red and open sores on face back chest arms. I've gotta get help from a lawyer that can help me get disability. I've lost my life from Lupus. When I look in a mirror I no longer see myself it's not me anymore. Hoping and praying 🙏 that I can get disability and sum relief from this mess.
1. Lawrence Community Admin
 Hi Lizzy, welcome to the community! Reading your story and learning more about your diagnosis journey truly puts everything into perspective. You are not alone in this. Many other community members have shared similar experiences with being unable to work. I agree with Ava; house work is very hard. How do you manage your fatigue from lupus while doing such a physically demanding job? I am very hopeful as well that your lawyer will be able to assist you in being approved for disability. Here is a link to current financial assistance programs for those living with lupus: <a href='https://lupus.net/living/financial-assistance-programs' target='_blank'>https://lupus.net/living/financial-assistance-programs/</a>. Sending you healing hugs! -Lawrence (Lupus.net Team)
2. Marci Kallick Moderator
 <inline-mention user-id="2043178" username="lizzyg"/> , It broke my heart to read that you no longer see yourself when you look in the mirror, that it's not you anymore. I am here to remind you...YOU are you always. The reflection in the mirror, the pain, the struggle...none of these things are you. You, my dear person, are the light that raised a young boy, the heart that beats to fight another day, the strength of a woman who is learning how to navigate this new life. At the core, the root of it all...you are a warrior! There are many in this community who understand this daily battle. We are here to support you! Please continue to let us know how you're doing. ~Marci (Lupus.net Team)
jenniferwatters Member
So, my story. I have been sickly since I was young. However, things got worse when I turned 20 (1995). I was diagnosed with Epstein-Barr after having mononucleosis and had it for nearly two full years. Had some other medical issues and in 2009 had my gall bladder removed. I was diagnosed with fibromyalgia in 2014 and SLE IN 2016. Sjörgens in 2017. I was diagnosed with ovarian cancer this year (age 45). Prior to my cancer diagnosis, I was on a steady diet of Plaquenil, Cymbalta, Lyrica, gabapentin, anti depressants, migraine medicine, medication for restless leg syndrome. I was on 11 meds per day. It was exhausting. I was decided it was enough. I wasn’t feeling any better being on all those meds and was sleeping away most everyday and barely functioning. In late 2018 I was introduced to Himalayan salt therapy (halo therapy). I decided to give it a try as well as adjust my diet. I began weekly salt therapy treatments as well as infrared sauna therapy. I removed gluten, dairy, caffeine and sugar and meat from diet. Within 6 months I began to feel better. I began walking and can walk up to 7 miles per day now. I do have caffeine now, but only tea. I do consume sugar but it does affect me and my psoriasis. I occasionally eat fish or chicken but only about once or twice per month. My vegan, gluten free, caffeine free diet has helped immensely. I have continued using salt and infrared therapy for the past 18 months and it has improved my health. I also began taking elderberry syrup daily. I recently had genetic testing done and it is believed my cancer is caused from a genetic mutation of the CHEK2 gene. I also have a genetic mutation of the FACTOR II and MTHFR. These mutations caused me to have a nearly fatal blood clot in 2005. I was on blood thinners for 11 years. I believe genetics plays a role but environmental factors contribute. I take only supplements daily now and pain meds immediately after surgery and only for a few days. Migraines completely disappeared once I stopped my meds. I also have sleep apnea and wear a cpap for that but instead of medication for my restless leg I take magnesium and use magnesium infused body cream nightly. I also do yoga, meditate and have started Pilates. Once pools here open again I will be able to swim. Everyone is different and needs to do what’s best for them, but I was to every major hospital system in Cleveland Ohio, including the Cleveland Clinic, and nothing helped me feel as good as I do now. I have bad days but they are rare and I take care to rest when I need to. Sorry for the life story, but I felt context was needed. I also believe that all these illnesses are connected some how. No one in my family has had any of the illnesses I have, so it makes me wonder how I got so lucky?
1. Samantha Costa Member
 Hi <inline-mention user-id="2039607" username="jenniferwatters"/> ! Thank you so much for sharing your story with us here. Everyone's is so unique to their own experience with lupus. It sounds like you've advocated for yourself and found a way to manage after all you've been through. We have a supportive community here, so I hope you never feel alone. Sending you well wishes. - Sam, <a href='https://lupus.net' target='_blank'>Lupus.net</a> Team
Linda from Texas Member
Thank you for this forum to share our stories, tips and support.