@bellaproduces.bsky.social
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🎉 Happy #WorldLupusDay! Today is all about spreading #LupusAwareness. Thank you to every organization, advocate, caregiver, and supporter working daily to educate the masses about the effects of #Lupus. Let's continue working together to champion the Patient voice.💜 #LupusChat
May 10, 2025 at 3:30 PM
🎉 Happy #WorldLupusDay! Today is all about spreading #LupusAwareness. Thank you to every organization, advocate, caregiver, and supporter working daily to educate the masses about the effects of #Lupus. Let's continue working together to champion the Patient voice.💜 #LupusChat
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Hi! I’m Tiffany, your #LupusChat co-host from New York City. I’m so excited about the discussion we have planned for #LupusAwarenessMonth! My favorite spring foods are strawberries & cherry plums. So glad they’re in season right now!
ID: two red plums put on top of a phone
ID: two red plums put on top of a phone
May 4, 2025 at 7:11 PM
Hi! I’m Tiffany, your #LupusChat co-host from New York City. I’m so excited about the discussion we have planned for #LupusAwarenessMonth! My favorite spring foods are strawberries & cherry plums. So glad they’re in season right now!
ID: two red plums put on top of a phone
ID: two red plums put on top of a phone
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Save the date! On May 4th join us here at #LupusChat at 3 PM ET as we kick off #LupusAwarenessMonth with a powerful discussion exploring what #LupusFeelsLike. Together, we’ll share our experiences and paint a clearer picture of the mental, physical, and emotional impacts of life with Lupus. 💜✨
April 30, 2025 at 10:32 PM
Save the date! On May 4th join us here at #LupusChat at 3 PM ET as we kick off #LupusAwarenessMonth with a powerful discussion exploring what #LupusFeelsLike. Together, we’ll share our experiences and paint a clearer picture of the mental, physical, and emotional impacts of life with Lupus. 💜✨
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Our next #LupusChat will be Sunday, March 23, 2025, at 3PM Eastern Time. Stay tuned for our upcoming topic announcement and remember to mark your calendars to save the date!
March 9, 2025 at 7:59 PM
Our next #LupusChat will be Sunday, March 23, 2025, at 3PM Eastern Time. Stay tuned for our upcoming topic announcement and remember to mark your calendars to save the date!
A6: it depends on the purpose of the visit and the doctor. I’ve been left flustered and upset but there’s been other times where I got what I needed out of visit. Preparing before visit is important . #LupusChat
Q6: Do you feel truly heard during short doctor visits? How do you make sure your concerns are addressed? #LupusChat
March 9, 2025 at 7:57 PM
A6: it depends on the purpose of the visit and the doctor. I’ve been left flustered and upset but there’s been other times where I got what I needed out of visit. Preparing before visit is important . #LupusChat
A5: I start by asking about side effects !! Aka my biggest concern. I also ask if it’s ok to stop suddenly or does it need to be tapered down. Sometimes I ask for a print out with more info to read later before I make a decision. I often ask for written instructions in visit summary too. #LupusChat
Q5: How do you navigate the conversation when your doctor suggests a new treatment? What steps do you take to ask the right questions, gather information, and make the best decision for your health? #LupusChat
March 9, 2025 at 7:52 PM
A5: I start by asking about side effects !! Aka my biggest concern. I also ask if it’s ok to stop suddenly or does it need to be tapered down. Sometimes I ask for a print out with more info to read later before I make a decision. I often ask for written instructions in visit summary too. #LupusChat
A4: I mostly communicate with my care team through MyChart messages unless it’s urgent. Then via phone. #LupusChat
Q4: How do you communicate with your care team between appointments? #LupusChat
March 9, 2025 at 7:42 PM
A4: I mostly communicate with my care team through MyChart messages unless it’s urgent. Then via phone. #LupusChat
A3: I get labs pretty much in line with doc visits so every 3-6 months. I get notifications when results are in and can view them on labcorp app or MyChart. My docs usually leave notes with the results on MyChart or if I get them done in advance we discuss at appointment. #LupusChat
Q3: When and how often do you get your lab work done? Are you able to view the results? How does your physician explain your lab results to you? #LupusChat
March 9, 2025 at 7:34 PM
A3: I get labs pretty much in line with doc visits so every 3-6 months. I get notifications when results are in and can view them on labcorp app or MyChart. My docs usually leave notes with the results on MyChart or if I get them done in advance we discuss at appointment. #LupusChat
A2: I have to bring notes about med changes, how treatments are going, new symptoms, any questions, requests for referrals. Writing things down helps. #LupusChat
Q2: What are your essentials to bring for appointments? How do you maximize your conversation with your doctor? #LupusChat
March 9, 2025 at 7:29 PM
A2: I have to bring notes about med changes, how treatments are going, new symptoms, any questions, requests for referrals. Writing things down helps. #LupusChat
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A1 Miah has an upcoming appointment in March with her pediatric Rheumatologist.
A challenge.... I think might be remembering to go for blood-work before the appointment.
#LupusChat
A challenge.... I think might be remembering to go for blood-work before the appointment.
#LupusChat
Q1: How often do you see your specialists, and is there an upcoming appointment you still need to schedule? What are your biggest challenges when preparing for doctor visits? #LupusChat
March 9, 2025 at 7:19 PM
A1 Miah has an upcoming appointment in March with her pediatric Rheumatologist.
A challenge.... I think might be remembering to go for blood-work before the appointment.
#LupusChat
A challenge.... I think might be remembering to go for blood-work before the appointment.
#LupusChat
A1: it changes depending on where my health is but rheum every 3-6 months, neurology every 3 months, psych every 2-5 months. Eye doc every year which um is way past due. The rest as needed. I share a car so scheduling is my biggest challenge. And being mentally prepared lol. #LupusChat
Q1: How often do you see your specialists, and is there an upcoming appointment you still need to schedule? What are your biggest challenges when preparing for doctor visits? #LupusChat
March 9, 2025 at 7:24 PM
A1: it changes depending on where my health is but rheum every 3-6 months, neurology every 3 months, psych every 2-5 months. Eye doc every year which um is way past due. The rest as needed. I share a car so scheduling is my biggest challenge. And being mentally prepared lol. #LupusChat
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Hiii everyone. My name is Christèle, I am one of your #LupusChat co-hosts, and I've had lupus for 18 years. If I could teleport I would be somewhere warm and sunny right now. Prob on a gorgeous Caribbean beach with some snacks and a good book.
March 9, 2025 at 7:12 PM
Hiii everyone. My name is Christèle, I am one of your #LupusChat co-hosts, and I've had lupus for 18 years. If I could teleport I would be somewhere warm and sunny right now. Prob on a gorgeous Caribbean beach with some snacks and a good book.
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Hello! I’m Tiffany, your #LupusChat Co-host from NYC. I’m a patient advocate who is passionate about health advocacy. If I could teleport to anywhere in the world, I would choose the sandy beaches of St. John in the US Virgin Islands. Their ocean waters would heal me!
March 9, 2025 at 7:10 PM
Hello! I’m Tiffany, your #LupusChat Co-host from NYC. I’m a patient advocate who is passionate about health advocacy. If I could teleport to anywhere in the world, I would choose the sandy beaches of St. John in the US Virgin Islands. Their ocean waters would heal me!
Hi I’m Bella from NJ. Diagnosed with lupus in 2016. I would definitely teleport to a warm beach. #LupusChat
Let’s get our #LupusChat party started! Can you share your name, where you are from, a little bit about yourself, and if you could teleport to anywhere in the world where would it be?
ID: a man in a blue suit teleporting in a forest surrounded by trees
ID: a man in a blue suit teleporting in a forest surrounded by trees
March 9, 2025 at 7:10 PM
Hi I’m Bella from NJ. Diagnosed with lupus in 2016. I would definitely teleport to a warm beach. #LupusChat
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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!
February 23, 2025 at 8:59 PM
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!
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
#LupusChat
Q5: How do you ensure effective communication between different members of your healthcare team? #LupusChat
February 23, 2025 at 8:59 PM
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
#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
February 23, 2025 at 8:43 PM
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
February 23, 2025 at 8:42 PM
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
February 23, 2025 at 8:40 PM
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
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
Q4: How do you advocate for yourself when seeking new treatments or second opinions, especially when a doctor’s recommendations don’t align with your healthcare goals? #LupusChat
February 23, 2025 at 8:51 PM
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
February 23, 2025 at 8:36 PM
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
February 23, 2025 at 8:34 PM
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
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
Q3: What characteristics do you look for in a primary care physician or specialist, and what elements make for an ideal doctor’s appointment in your experience? #LupusChat
February 23, 2025 at 8:44 PM
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
February 23, 2025 at 8:29 PM
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
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
Q2: What concerns or considerations do you have when adding a new specialist to your healthcare team? #LupusChat
February 23, 2025 at 8:38 PM
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