bellaproduces.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

Our next #LupusChat will be Sunday March 9, 2025 at 3PM Eastern Time. Stay tuned for our upcoming topic announcement and remember to mark your calendars to save the date!

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A5: my docs usually do quick review of each others notes at the start of appointments. If we are considering a new treatment, sometimes I ask or they suggest emailing one another before we green light it. #LupusChat

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A4: Advocating for yourself is tough when a doctor isn’t listening, downplays your experience, or makes you second-guess yourself with gaslighting. When that happens, I trust my gut, cut my losses, and start searching for a specialist who will truly hear me. My health is worth it! #LupusChat

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A4: I try my best to prepare for every medical appointment with notes on how my health has been in between visits, any concerns or questions I may have, things I may want to try or referrals I may need to see a new specialist. Doing this before each visit helps me to be my best advocate. #LupusChat

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A3. I also appreciate a specialist who indulges my curiosity. I have questions about treatments/procedures/etc and I and to fully discuss them. #LupusChat

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A4: I advocate for myself by going thru past treatments - what has worked and hasn’t. Explaining how symptoms or treatments affect my life. Asking for alternatives. If something doesn’t line up , I try to gather courage to explain why and what I need instead. #LupusChat

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A2. It really puts me at ease that my specialists know each other and work together. It's truly a TEAM effort. #LupusChat

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A3: When it comes to my doctors, I want someone kind and empathetic who listens and welcomes me as an active decision-maker when designing my treatment plan. I need them to be honest and have the courage to say “I don’t know, but let’s find someone who does.” #LupusChat

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A3: I look for a doctor who is kind, honest, and patient. I want someone who cares. And ideal doctor’s appointment has clear communication, time for questions, clearly written notes/directions on next steps. #LupusChat

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A2: I have to ensure that new providers understand the dynamic of how my care is managed and know their place on the team. They must work well with others and also understand that I run point and we don’t move/treat without MY green light. I have to review all data and facts first. #LupusChat

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A2: I try to schedule docs within same hospital network to make communication easier. I also want them to be somewhat educated about lupus and how it relates to their own speciality. And it’s important that they listen to me and treat me with respect. #LupusChat

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Hi.. I'm Elizabeth from NJ and a #LupusChat co-host My connection to Lupus is through my daughter Miah GIF 🤔

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A1: specialists that are essential to my care right now include my neurologist, psychiatrist, and dermatologist. I also need to schedule with the eye doc and physical therapist. #LupusChat

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Hi everyone. I'm Christèle, one of your #LupusChat co-hosts. My lupus has been quiet-ish for years, pero after this little vacation, today I'm feeling 😴 (worth it tho)

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Hi I’m Carly! I’m a Parient Advocate, Researcher, and Co-host of #LupusChat. This is me today

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Hello! I’m Tiffany, your #LupusChat Co-host from New York City. This month marks my 15th #Lupieversary! 15 years of surviving and doing my best to thrive after lupus. This meme represents my mood because every day I wake up with a track of GNX in my head.

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Hi I’m Bella from NJ. Diagnosed with lupus 9 years ago. Feeling a little emotional today. #LupusChat

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👉🏾📌 Join us this Sunday for #LupusChat at 3 PM ET for an insightful discussion on assembling the best healthcare team to support your lupus journey. 👩🏾‍⚕️ 👨🏻‍⚕️ We’ll dive into finding the right specialists, advocating for personalized care, and ensuring your team works together to meet your unique needs.

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A day without coffee is like… Just kidding. I have no idea.

submitted 16 days ago • 24 comments

Have you ever eaten 4 bananas in a day? Yea, me too.

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About to get nerve blocks for migraines. I forget what it feels like. Hope it’s easy peasy and works.

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Philly sounds exactly as you’d expect 💥💥💥💥💥💥

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Our next #LupusChat will be Sunday, February 23rd, 2025 at 3 PM ET. Stay tuned for updates and remember to mark your calendar to save the date!

submitted 18 days ago • 0 comments

A:6 Depends on what's happening in your body. I know some folks who can have their lupus treated by their primary Care physician, but then there's folks like me who have a team of specialists because of multi-organ involvement, which includes a rheumatologist at the head of the team. #lupuschat

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A6. For me, it rheumatologist and nephrologist were my main providers. Then we added GI, eye doctor, cardio, endocrinologist, hematologist. Honestly it feels like it never ends lol #LupusChat

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A6: start with rheumatology and from there add as your symptoms call for it. Currently my most important outside of rheum are neurology, psychiatry, and dermatology. But they used to be cardiology and pulmonary. Each person is unique. Make sure docs are on same page tho. Very important. #LupusChat

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A:5 This is a really hard question for me. My flares seem to be connected to stress (which is connected to living situation and other major life situations) and my hormones: things beyond my control, and (over)exertion. So I just take my meds, try to rest when I can, music. #lupuschat

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A3 * Be assertive and clear: Share your concerns and questions confidently, without apologizing or feeling intimidated. * Request clear explanations of diagnoses, treatments, and test results. * Write down important information, including treatment plans and follow-up appointments. #LupusChat

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A5: rest is so important - early in flare and often. Communication with docs and family/friends. Prednisone is my bestie this past year. My best advice is to not push it or ignore it bc you’re setting yourself up for bigger fall with possible long term consequences. #LupusChat

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Ah yes . long charger. Very important. #LupusChat

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A3 * Prepare a list of questions Write down your concerns, symptoms, and questions to discuss w/ the doctor * Track your child's symptoms, medications & any changes to share with the doctor * Bring relevant medical records, test results, and medication lists #LupusChat

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A2 #LupusChat overwhelming fatigue, fevers, joint issues, and anemia were the earliest. I lived with them for quite a while before seeking help.

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A4: phone charger ! Warm clothes - hospitals are icy ! For extended stays I need my personal hygiene stuff. #LupusChat

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A3. I make sure I'm as knowledgeable as I can, but also demand that symptoms/labs/treatment plans be explained to me, I want to be an active participants! #LupusChat

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A3: My best advice? Be an active partner in your care! Learn about your condition, connect with others, keep a journal, ask questions, and speak up about your needs. Don’t hesitate to tell your care team how they can support you—show them you want a voice in your treatment plan! #LupusChat

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A3: get a second opinion especially if your concerns are dismissed. You know your body better than anyone else. Get educated and become a subject matter expert on your diagnosis and how you experience it. #LupusChat

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A3: When I was first diagnosed, I kept a daily journal tracking my pain levels, locations, duration, meals, and overall well-being. This helped me spot patterns and identify foods and activities that triggered my symptoms. It became a powerful tool for managing my health! #LupusChat

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A3: took me years to advocate for myself but it’s a must. Preparing questions/concerns before visits. stating how symptoms are affecting life, job, relationships. making clear all the efforts I’m making to improve health. I’ve brought my mom as backup. Being vocal and unashamed. #LupusChat

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A2: When I got to college I was experiencing a lot of hair loss, fatigue, and an irregular menstrual cycle. All signs that signaled something was wrong but I never connected the dots back then because I didn’t know anything about lupus or chronic illness. #LupusChat

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A2. I was diagnosed quickly due to swelling in my hands and classic nephritis markers. But actually the extreme fatigue started even before that. I just didn't make the connection (or mention it to anyone) until way later. #LupusChat

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