Community Forum
Community Forum
September 12th - 3PM EST
Welcome to the #LupusChat recap! In that chat, we had an open forum where community member could share any tips, questions, or resources they had on their mind.
We went over some #LupusChat guidelines to help our conversation flow smoothly, then got our #LupusChat party started by sharing our name, where we are from, a little bit about ourselves, and if we were a cupcake what flavor we would be. Here is a recap of our conversation and here are just a few of the wonderful people who joined us at #LupusChat.
Hey #LupusChat! I'm Sofia from Portugal and I love radio and music. I would be a red velvet cupcake, but not too sweet 😂😂 https://t.co/yg7LAdyjQ3
— Sofia (@abssofia) September 12, 2021
Hi! Raquel from Texas. I am finally getting my disease under control. I would be a vanilla latte or salted caramel cupcake. #LupusChat https://t.co/OzaUKI23Pn
— RaquelRoschell (@raquelonpurpose) September 12, 2021
Ivey Janette,Albuquerque. Surviving lupus since 1995. Slowly heading into retirement. Favorite cupcake flavor? Chocolate with vanilla icing,sprinkles and chocolate chips. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) September 12, 2021
#lupuschat A1: Jae Rivera, Florida. A humble freckle faced girl with a dollop of Lupus. Warrior since 2012. I’d be a Dulce De Leche cupcake. https://t.co/DROOH9Hquu
— PhillyzJamPoet (@theJamPoet) September 12, 2021
Hi.... I'm Elizabeth from NJ and a #LupusChat co-host
— Caring For Lupus (@CaringForLupus) September 12, 2021
My connection to lupus is through my daughter Miah, she was diagnosed with lupus five years ago.
We loveeeeee a good red velvet cupcake https://t.co/K3Ewr1XBXp pic.twitter.com/OGNqNI9s6t
#LupusChat im Jennifer 19 year Lupus Warrior who calls Philadelphia home, Atlanta my birthright and Central Florida my old home...🙏🙏🙏
— The Lupus Rainbow (@thelupusrainbow) September 12, 2021
Then we began with question 1.
Q1. For people with Lupus Nephritis: on a general health questionnaire, if you are asked if you have Kidney Disease, how do you answer and why? (via @Xtel007)
A1. I tend to answer yes. Because to me Lupus Nephritis is kidney disease caused by Lupus. It might not be the exact same thing, same pathways, etc.
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) September 12, 2021
I just assume that w.e would affect someone with CKD will affect me with LN. #LupusChat
A1: I simply say yes. If asked to elaborate, i dont mind telling people i had kidney failure due to lupus or how it has effected my life. #lupuschat
— Ellzworth the Time Traveler (@elainesinsane) September 12, 2021
A1. I check Chronic Kidney Disease. Nephrologist told me years ago I was stage 1/2 along with lupus nephritis. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) September 12, 2021
A1. I answer yes, and if there is a space to write in, I clarify. I do this because I found doctors take my kidney problems more seriously when I do this #LupusChat https://t.co/XllhjGQeNO
— MikeyMoozer bIm (@MikeyMoozer) September 12, 2021
A1: response: Tiffany, thank you so much for sharing. I never considered that and now I’m left to wonder if there should be specification? 🧐 Thoughts? #Lupuschat
— PhillyzJamPoet (@theJamPoet) September 12, 2021
Then came question 2.
Q2. What are your favorite health-related mobile apps to use?
I use Bearable to track my symptoms and humor/mood #LupusChat https://t.co/GEzDLxVJj3
— Sofia (@abssofia) September 12, 2021
A2. MyChart. I have all my records and medications on it. Plus I can contact most of my doctors through it(Presbyterian network) #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) September 12, 2021
A2 MyChart is what I use the most. #LupusChat
— staff of one (@hand_to_eye) September 12, 2021
A2. My health system also has a very useful patient portal, and I have to confess I don't use it enough. But I can view lab results, communicate with my docs, schedule appointments. Pretty great tool. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) September 12, 2021
A2: #LupusChat I'm a serious Mad Researcher 😠 I want to know...and quest to realize knowledge...therefore I utilize different apps/website. I love @BHMinfo Black Health Matters...
— The Lupus Rainbow (@thelupusrainbow) September 12, 2021
A2: The second health app I like using is the FitBit app. My favorite thing about it is that I can see the quality of my sleep. I have insomnia so it’s been really helpful to see when I’m sleeping irregularly. #LupusChat
— Tiffany (@TiffanyAndLupus) September 12, 2021
We then shared topics of interest in question 3.
Q3. What is a topic that you would like to see discussed at #LupusChat?
A3: Response: Dental Health is a good one. The beating my enamel has taken from being sick so much. No one discusses that the vomiting you experience from the disease or it's medications wears on your teeth just about the same as some eating disorders. #LupusChat
— PhillyzJamPoet (@theJamPoet) September 12, 2021
A3: I’d like to see Central Nervous System Lupus discussed at #LupusChat. I’m sure there are a lot of symptoms for it that I’m not aware of. I’d also like to know what kind of treatment options are available for dealing with brain fog.
— Tiffany (@TiffanyAndLupus) September 12, 2021
Q3: When Lupus begins to affect your personality and/or mood? How comfortable are you talking about it? Do you have a support system or advocates that can see the signs and help you along? #LupusChat
— PhillyzJamPoet (@theJamPoet) September 12, 2021
A3: I would like to see more about not doctor panels but "patient"/lupus warrior panels about how to manage day to day life, especially when the diagnosis comes out of nowhere, so like how to transition into a whole new way of life. Hope that makes sense.
— Freitalisa (@freitalisa) September 12, 2021
A3. How lupus affects work and everyday activities. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) September 12, 2021
A3: I would love to see some conversation about people's relationship with alcohol. When I drink now my lupus flares up and I wake up fter a few hours in agony.
— Certified bad bitch. ♒ 🇯🇲🇰🇳♿ (@residentchemist) September 12, 2021
I'd also like to see how people deal with friends/family who don't understand our limitations #lupuschat https://t.co/07MKfRsNFB
Question 4 came after that.
Q4. Do you have multiple health conditions? If yes, how do you manage them simultaneously?
A4: My favorite saying is, "My Lupus comes with Friends." There's a host of complimentary health conditions that I've literally had to do an analysis to determine what remedies or regimens bode well across the board. Most of the time, I have to chose. #LupusChat https://t.co/WGLQRKFTzp
— PhillyzJamPoet (@theJamPoet) September 12, 2021
A4 yes I have other health conditions but I believe they are all related, asthma,chronic UTI,MGUS,etc. #LupusChat
— staff of one (@hand_to_eye) September 12, 2021
Lupus, depression and anxiety. Such a chaotic trio 🤯 #LupusChat https://t.co/ryzHiIISF9
— Sofia (@abssofia) September 12, 2021
A4. I also have Raynaud's phenomenon. Secondary Raynauds, which I also don't really differentiate from my overall Lupus symptoms. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) September 12, 2021
A4. Yes. Lupus. Osteoarthritis. Heart disease. Asthma. PTSD and depression. My doctors are all in communication with each other re: medication and treatment. Especially in the last year after a heart attack and 4 trips to cardiac care. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) September 12, 2021
A4: I do have multiple health conditions. It can be difficult to address them all simultaneously. Some days some of them hit me harder than others. I try to be mindful of which ones I’m struggling with most and manage it that way. #LupusChat
— Tiffany (@TiffanyAndLupus) September 12, 2021
Finally came question 5.
Q5, Does anyone have any celebrations on the horizon that we can collectively congratulate? Anything in the future that anyone needs well wishes for?
A5. I do need some good vibes. September is not starting out the way I wanted because of some health things I need to get out of the way. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) September 12, 2021
A5. Please send good vibes so that I hit my groove in my work life, and I can get back to a fitness routine as well. #LupusChat
— 🇭🇹♊⚽️💜9¾ Felix Felicis (@Xtel007) September 12, 2021
A5: I'd like to celebrate everyone on this chat and participating on this hashtag. The community we create is so valuable. The communication among us is necessary. Thank you for coming to the table and sharing pieces of yourselves with the collective. #LupusChat https://t.co/V9zXL1fubu
— PhillyzJamPoet (@theJamPoet) September 12, 2021
I love this mindset! Living with lupus is so complex so I think it's so important that we cheer for ourselves as we push through and make it to another day! #LupusChat
— Tiffany (@TiffanyAndLupus) September 12, 2021
A5: It's technically still VIRGO SEASON so even though my birthday was on August 28th, I'm still celebrating all season long lol!!! #LupusChat
— Tiffany (@TiffanyAndLupus) September 12, 2021
A5. I turn 60 on November 4th. Big milestone. Especially for someone with lupus. Asking for prayers and hugs as I navigate heart disease AND the maddening process of applying for disability,plus having to go back to work until it kicks in. #LupusChat
— Ivey McClelland(she/her)😷😷😷 (@iveyjanette_207) September 12, 2021
A5: at this moment I am WILDLY excited to share that I just got a call from the rheumatologist office that I have been trying to meet with and they can finally take me as a patient this week!!!! I will have care again after months of no team!!! #lupuschat
— Freitalisa (@freitalisa) September 12, 2021
A5: October 21st is the one year anniversary of my kidney transplant. 🎊 #lupuschat
— Ellzworth the Time Traveler (@elainesinsane) September 12, 2021
Thank you for reviewing our recap. You can still participate in this Twitter conversation by clicking on the LupusChat icebreaker prompt and questions above and replying. Make sure to use the format "A1. This is my answer. #LupusChat" and add the hashtag to your responses.
Enjoy the rest of your day & remember to practice a little (or a lot) of self-care today.
It is absolutely okay to take time for self care.
You can’t do things well if you don’t feel well.