lupus SLE

Lupus Diagnosis - Lupus Self Test - Hetlana

Lupus Diagnosis and Lupus Self Test: Member Hetlena’s pointers for her old (newbie with SLE) self”

What would someone who has lived with lupus (SLE) for decades tell her younger, newly diagnosed self? PatientsLikeMe member Hetlena (@TheLupusLiar), who was diagnosed with lupus in 1993, recently answered that question for us in the following personal essay reflecting on what she’s learned through the years… “This isn’t the end. There are other things that can give your life meaning.” —Christine Palmer, Dr. Strange (2016 film) In the 2016 movie Dr. Strange, a main character, Christine Palmer, captures how it feels to be confused, frustrated and hopeless – feelings I’m very familiar with because of SLE. The diagnosis of lupus can be mixed with pain, nausea, fever, swelling and all too many other symptoms and ailments combined. From the very beginning, it became more than I could bear – or at least so I thought. I felt targeted all the time. When I reflect on my feelings right after my diagnosis, I remember most of all that I didn’t feel confident. If I knew then what I know now, I would… Question everything There was so much about lupus that I didn’t know about (and years later, there still is). Naturally, a diagnosis or the confirmation of one can come as a …

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Parents with lupus (or any health condition) ‘don’t have to be perfect’ — take it from this mom

PatientsLikeMe member Jeanette Alston-Watkins (JeanetteA6872) was diagnosed with lupus in 2006, when her kids were 11 and 14. “My kids are my strength and they gave me energy and willpower,” she says in this Q&A about parenting with SLE. (Jeanette is on our 2018 Team of Advisors.) Can you share a bit about your diagnosis and how it impacted your children? They were 11 and 14 when I was diagnosed with lupus, but I started getting symptoms three years before, if not earlier. They didn’t understand why their mom was always sick and tired. To give you a little background on me, I need to always stay busy. When I was diagnosed with lupus in 2006, I had just recently been married (less than a year) and I was working full-time as a sales manager for a manufacturing plant. I was going to school part-time to complete my bachelor’s degree in business. I was a team mom for my son’s football and lacrosse teams, and for my daughter’s soccer and lacrosse teams, and I also assisted with her volleyball team. I really stayed busy. So, when you’re that busy and have all this energy, people notice when your energy level isn’t …

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Lupus Hair Loss and Folic Acid Hair Loss: Tips and Treatments

Are you losing some of your locks because of lupus? Hair loss isn’t usually listed among the core symptoms of lupus, but it does affect many people living with SLE (systemic lupus erythematosus) and discoid lupus. It may be caused by lupus itself, certain treatments for lupus, or other illnesses or health issues (such as thyroid problems or nutritional deficiencies), according to the National Resource Center on Lupus. How do PatientsLikeMe members manage it and try to protect their mane? How members manage hair loss A number of PatientsLikeMe members with lupus have mentioned hair loss in the forum, and some say that hair loss was among their first cluster of symptoms pointing to lupus or a health condition. (Join PatientsLikeMe or log in to see members reporting hair loss, its severity and treatments they’ve tried.) The same tips and products won’t work for everyone (and remember to check with your doctor before trying new supplements or treatments) — but here are a few pointers and perspectives from members who’ve had hair loss. “My hair has been falling out for 2 1/2 years. What’s helped me with it is coconut oil, hair vitamins (vitamin B, folic acid, biotin). This doesn’t stop it from falling out but it speeded up healthy hair …

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Zoodles! Let’s dish on lupus/food + swap recipes

If you’re living with lupus, have you found any particular foods that affect you and your condition — for better or worse? Member Jeanette (JeanetteA6872), a member of the 2018 Team of Advisors who’s living with systemic lupus erythematosus (SLE), shares which ingredients she tries to include or avoid in her diet, plus three of her favorite recipes (psst—one involves zoodles!). Food Q&A with Jeanette Jeanette says she turned to dietary changes when she stopped taking Plaquenil due to severe side effects, including retina damage. “I had nothing to lose — I signed up for Tony Robbins’ Unleash the Power Within [a self-help program] that made me look at myself and my relationship with food differently,” she says. “I started logging my food intake for a few weeks on and off, I noticed how some of my favorite foods were causing me some issues ranging from stomach pains to full inflammation. That’s when I started paying close attention to what my body was telling me and I needed to do something about it.” Here’s what else she shared with us in a recent Q&A. Everyone is different, so these foods and dietary changes may not affect you and your lupus the same …

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