🎉 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

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

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. 💜✨

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

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

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

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

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

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.

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

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

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

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

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

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

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

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

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

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

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)

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

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.

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

👉🏾📌 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.

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

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

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

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

I have other diagnosis as well so I also have Cardiologist, ENT, Endocrinologist to keep on track of things. Also an ophthalmologist to keep eye on eyes while on plaquenil. #LupusChat

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!

A5: Rest. I really encourage you to create a wonderful bed space, because you may be in bed A LOT. Take the Tylenol, use the THC oil. Don't try to be heroic. Use the pain-relieving meds. Stay hydrated. #LupusChat

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

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

A6: My Internist suggested seeing a Rheumatologist. So now have a Rheumatologist and Endocrinologist who specifically treat Lupus and thyroid disease. But my eye doctor, dentist, and gynecologist are all active in my care, and aware or medications and side effects. #LupusChat

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

A3. Bring notes and ask questions. If I need to,I'll take pictures of the swelling in my legs and/or bruises from anemia. And I KEEP asking questions to every doctor on my medical team. #LupusChat

A2.High blood pressure. 1987. Infertility,I had 6 miscarriages before my diagnosis in 1995. Severe edema in my right leg and foot starting in 1991. I wasn't diagnosed until 1995. #LupusChat

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

Girl. These outlets are always mad far! #LupusChat

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

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

Ah yes . *long* charger. Very important. #LupusChat