#LupusChat Transcript
Healthcare social media transcript of the #LupusChat hashtag.
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See #LupusChat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | #LupusChat @Lupus_Chat 🎉Welcome! Today we’ll discuss our #LupusChat Year in Review. Let’s recap our year as we look forward to growth & setting new intentions as a community in 2018.📈✨ https://t.co/8N1SMIeyOX |
| #LupusChat @Lupus_Chat Bienvenido a #LupusChat! Hoy discutiremos nuestra transición del diagnóstico a la aceptación para comprender mejor nuestra nueva vida con la enfermedad crónica. https://t.co/uSeXiYmYUJ |
 | Carly by Nature @SynceNerd_Carli #LupusChat tiiiiiiiiime!!!! Let's goooooo!!! https://t.co/TPipqAzoi9 |
 | 💜⚽🇭🇹♊ Xtel Bond @Xtel007 RT @Lupus_Chat: 🎉Welcome! Today we’ll discuss our #LupusChat Year in Review. Let’s recap our year as we look forward to growth & setting new intentions as a community in 2018.📈✨ https://t.co/8N1SMIeyOX |
 | Tiffany ⁷ @TiffanyAndLupus Welcome to #LupusChat! Today we’ll discuss our transition from diagnosis to acceptance so that we can better understand our new life with Chronic Illness. https://t.co/MvxYDnw1F6 |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: 🎉Welcome! Today we’ll discuss our #LupusChat Year in Review. Let’s recap our year as we look forward to growth & setting new intentions as a community in 2018.📈✨ https://t.co/8N1SMIeyOX |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Bienvenido a #LupusChat! Hoy discutiremos nuestra transición del diagnóstico a la aceptación para comprender mejor nuestra nueva vida con la enfermedad crónica. https://t.co/uSeXiYmYUJ |
| #LupusChat @Lupus_Chat Welcome to #LupusChat! Today we’ll discuss our transition from diagnosis to acceptance so that we can better understand our new life with Chronic Illness. https://t.co/K5QmTdSqfX |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Welcome to #LupusChat! Today we’ll discuss our transition from diagnosis to acceptance so that we can better understand our new life with Chronic Illness. https://t.co/K5QmTdSqfX |
 | You cant fight the good fight if you're dead @sickysummie @Lupus_Chat @SynceNerd_Carli @CaringForLupus @Xtel007 Oh, I got this 👍 #LupusChat |
 | Meg Nunez @Megisflying RT @Lupus_Chat: Welcome to #LupusChat! Today we’ll discuss our transition from diagnosis to acceptance so that we can better understand our new life with Chronic Illness. https://t.co/K5QmTdSqfX |
 | RaquelRoschell @raquelonpurpose RT @Lupus_Chat: Welcome to #LupusChat! Today we’ll discuss our transition from diagnosis to acceptance so that we can better understand our new life with Chronic Illness. https://t.co/K5QmTdSqfX |
| #LupusChat @Lupus_Chat There are a lot of different questions, concerns, and unknowns when newly diagnosed w/Chronic Illness. So today we’ll unpack those thoughts & share our experiences. #LupusChat https://t.co/k0f109bLhM |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: There are a lot of different questions, concerns, and unknowns when newly diagnosed w/Chronic Illness. So today we’ll unpack those thoughts & share our experiences. #LupusChat https://t.co/k0f109bLhM |
| #LupusChat @Lupus_Chat Before we get started let's go over some #LupusChat guidelines that help our conversation flow smoothly. |
| Tiffany ⁷ @TiffanyAndLupus Before we get started let's go over some #LupusChat guidelines that help our conversation flow smoothly. |
 | itsmorenamorena @itsmorenamorena It is #LupusChat time! https://t.co/WJYOLFMlU0 |
| #LupusChat @Lupus_Chat If you are new to @Lupus_Chat & would like to know how to participate in the conversation, just click on the tag~> #LupusChat to join us! https://t.co/MKVFtCuCjR |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Before we get started let's go over some #LupusChat guidelines that help our conversation flow smoothly. |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: If you are new to @Lupus_Chat & would like to know how to participate in the conversation, just click on the tag~> #LupusChat to join us! https://t.co/MKVFtCuCjR |
| #LupusChat @Lupus_Chat Use the tag ~> #LupusChat in EACH of your tweets to join the conversation. We will share them with the online #lupus community! https://t.co/g2ghxfb6MV |
| Tiffany ⁷ @TiffanyAndLupus Use the tag ~> #LupusChat in EACH of your tweets to join the conversation. We will share them with the online #lupus community! https://t.co/1wFMf0leZz |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Use the tag ~> #LupusChat in EACH of your tweets to join the conversation. We will share them with the online #lupus community! https://t.co/g2ghxfb6MV |
| RaquelRoschell @raquelonpurpose RT @Lupus_Chat: If you are new to @Lupus_Chat & would like to know how to participate in the conversation, just click on the tag~> #LupusChat to join us! https://t.co/MKVFtCuCjR |
| #LupusChat @Lupus_Chat Use Q1 or A1 to answer each question. This helps connect your responses to each question in our post-chat. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus Use Q1 or A1 to answer each question. This helps connect your responses to each question in our post-chat. #LupusChat |
| RaquelRoschell @raquelonpurpose RT @Lupus_Chat: Use Q1 or A1 to answer each question. This helps connect your responses to each question in our post-chat. #LupusChat |
| #LupusChat @Lupus_Chat As always, please respect our featured co-hosts/guests as well as each other & save all personal questions for after #LupusChat. |
| Tiffany ⁷ @TiffanyAndLupus As always, please respect our featured co-hosts/guests as well as each other & save all personal questions for after #LupusChat. |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: As always, please respect our featured co-hosts/guests as well as each other & save all personal questions for after #LupusChat. |
| #LupusChat @Lupus_Chat Let’s get our #LupusChat party started! Share your name, location, connection to lupus & name a place you’d like to visit this year? ✈️🚘🚇🛳 https://t.co/VWuscEZaGM |
| RaquelRoschell @raquelonpurpose RT @Lupus_Chat: As always, please respect our featured co-hosts/guests as well as each other & save all personal questions for after #LupusChat. |
| Tiffany ⁷ @TiffanyAndLupus Tiffany here, your #LupusChat co-host from NYC. This month is my 8th LUPIEVERSARY with SLE/Nephritis. I plan on a visit to Montréal in the summer! https://t.co/YFdZjQfFRC |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: Tiffany here, your #LupusChat co-host from NYC. This month is my 8th LUPIEVERSARY with SLE/Nephritis. I plan on a visit to Montréal in the summer! https://t.co/YFdZjQfFRC |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Let’s get our #LupusChat party started! Share your name, location, connection to lupus & name a place you’d like to visit this year? ✈️🚘🚇🛳 https://t.co/VWuscEZaGM |
| Carly by Nature @SynceNerd_Carli @fjrascon Welcome to #LupusChat! Thanks for joining us today. |
 | Friends AgainstLupus @AgainstLupus RT @Lupus_Chat: Let’s get our #LupusChat party started! Share your name, location, connection to lupus & name a place you’d like to visit this year? ✈️🚘🚇🛳 https://t.co/VWuscEZaGM |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Let’s get our #LupusChat party started! Share your name, location, connection to lupus & name a place you’d like to visit this year? ✈️🚘🚇🛳 https://t.co/VWuscEZaGM |
| #LupusChat @Lupus_Chat Antes de empezar, vamos a repasar algunas pautas #LupusChat que ayudan a que nuestra conversación fluya sin problemas. |
| #LupusChat @Lupus_Chat Utilice la etiqueta ~> #LupusChat en cada uno de sus tweets para unirse a la conversación. Los vamos a compartir en la comunidad de #lupus! |
| #LupusChat @Lupus_Chat Utilizar Q1 o A1 para responder a cada pregunta. Esto ayuda a conectar sus respuestas a cada pregunta en nuestro post-chat #LupusChat |
| #LupusChat @Lupus_Chat Por favor, respete a nuestros invitados especiales y unos a otros y guardar todas las preguntas personales para después de #LupusChat. |
 | Amy Burns @AmyBurnsBooks Amy from Vermont, having the SLE, and this summer I would love to visit Maine (despite living so close I've never been well enough to make the trip, but expect to be this summer). #LupusChat |
| #LupusChat @Lupus_Chat Comencemos #LupusChat! Comparta su nombre, área, conexión con lupus y nombra un lugar que te gustaría visitar este año? https://t.co/6FlWV3gSr3 |
| #LupusChat @Lupus_Chat RT @AmyLBurns: Amy from Vermont, having the SLE, and this summer I would love to visit Maine (despite living so close I've never been well enough to make the trip, but expect to be this summer). #LupusChat |
| RaquelRoschell @raquelonpurpose Hi Everybody! Raquel here in Tx. Diagnosed w/Arthritis & Lupus within the last 2 yrs. I am actually going to where I'd like to visit in a couple wks - Washington, D.C.! ( and hope to also visit NYC) #LupusChat https://t.co/SHTYQFHV2K |
| itsmorenamorena @itsmorenamorena I'm Stephanie | in the ATL | Lupus since 2013 | Going to Spain this summer and a cruise later this year, ports TBD #LupusChat https://t.co/Mho5SadiaX |
| Carly by Nature @SynceNerd_Carli Hey everyone! I’m Carly, Co-host of #LupusChat, Diagnosed in 2011 but fighting long before. This year I’d like to visit New Orleans and head back to Maui, my happy place! https://t.co/pBiboDmPCE |
| #LupusChat @Lupus_Chat RT @itsmorenamorena: I'm Stephanie | in the ATL | Lupus since 2013 | Going to Spain this summer and a cruise later this year, ports TBD #LupusChat https://t.co/Mho5SadiaX |
| Carly by Nature @SynceNerd_Carli ¡Hola a todos! Soy Carly, coanfitriona de #LupusChat, diagnosticada en 2011 pero luchando mucho antes. ¡Este año me gustaría visitar Nueva Orleans y regresar a Maui, mi lugar feliz! https://t.co/C6qTk7Xkej |
| #LupusChat @Lupus_Chat RT @mommade4change: Hi Everybody! Raquel here in Tx. Diagnosed w/Arthritis & Lupus within the last 2 yrs. I am actually going to where I'd like to visit in a couple wks - Washington, D.C.! ( and hope to also visit NYC) #LupusChat https://t.co/SHTYQFHV2K |
| Carly by Nature @SynceNerd_Carli RT @itsmorenamorena: I'm Stephanie | in the ATL | Lupus since 2013 | Going to Spain this summer and a cruise later this year, ports TBD #LupusChat https://t.co/Mho5SadiaX |
 | Nae :) @heynaehey_ @Lupus_Chat I'm Nae, I'm from Memphis, TN. I have SLE and Lupus Nephritis. I would love to visit New York this year!! #LupusChat https://t.co/6l4HDhOH8E |
| Carly by Nature @SynceNerd_Carli @itsmorenamorena Welcome back, sis! Always good to see you at #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @mommade4change: Hi Everybody! Raquel here in Tx. Diagnosed w/Arthritis & Lupus within the last 2 yrs. I am actually going to where I'd like to visit in a couple wks - Washington, D.C.! ( and hope to also visit NYC) #LupusChat https://t.co/SHTYQFHV2K |
| #LupusChat @Lupus_Chat RT @missnaedotcom: @Lupus_Chat I'm Nae, I'm from Memphis, TN. I have SLE and Lupus Nephritis. I would love to visit New York this year!! #LupusChat https://t.co/6l4HDhOH8E |
| Carly by Nature @SynceNerd_Carli @mommade4change Welcome back to #LupusChat, Raquel! |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Antes de empezar, vamos a repasar algunas pautas #LupusChat que ayudan a que nuestra conversación fluya sin problemas. |
| RaquelRoschell @raquelonpurpose @itsmorenamorena @Lupus_Chat Spain is my dream vaca - Barcelona to be exact!! #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Utilice la etiqueta ~> #LupusChat en cada uno de sus tweets para unirse a la conversación. Los vamos a compartir en la comunidad de #lupus! |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Utilizar Q1 o A1 para responder a cada pregunta. Esto ayuda a conectar sus respuestas a cada pregunta en nuestro post-chat #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Por favor, respete a nuestros invitados especiales y unos a otros y guardar todas las preguntas personales para después de #LupusChat. |
| Carly by Nature @SynceNerd_Carli RT @AmyLBurns: Amy from Vermont, having the SLE, and this summer I would love to visit Maine (despite living so close I've never been well enough to make the trip, but expect to be this summer). #LupusChat |
| You cant fight the good fight if you're dead @sickysummie I'm Summer from Seattle representing UCTD/lupus and I've had autoimmune stuff since 2005. I hope to travel to Baltimore this year to see a friend. #lupuschat |
| #LupusChat @Lupus_Chat RT @sickysummie: I'm Summer from Seattle representing UCTD/lupus and I've had autoimmune stuff since 2005. I hope to travel to Baltimore this year to see a friend. #lupuschat |
| Carly by Nature @SynceNerd_Carli @AmyLBurns Welcome to #LupusChat Amy! Maine is a great choice! Hoping to get there soon myself. I haven't been that far up the East Coast yet. I've come close though |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: Hey everyone! I’m Carly, Co-host of #LupusChat, Diagnosed in 2011 but fighting long before. This year I’d like to visit New Orleans and head back to Maui, my happy place! https://t.co/pBiboDmPCE |
| itsmorenamorena @itsmorenamorena @mommade4change @Lupus_Chat I'll be in Madrid and Valencia. I hear Barcelona is nice! #LupusChat |
 | Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Let’s get our #LupusChat party started! Share your name, location, connection to lupus & name a place you’d like to visit this year? ✈️🚘🚇🛳 https://t.co/VWuscEZaGM |
| RaquelRoschell @raquelonpurpose @SynceNerd_Carli Thanks Carly! #LupusChat |
| Carly by Nature @SynceNerd_Carli @mommade4change Definitely let us know when you'll be in DC and NYC. We'd love to meet up! #LupusChat |
| #LupusChat @Lupus_Chat Everyone ready? Here comes Question 1! #LupusChat https://t.co/XF28wEa7ih |
| Carly by Nature @SynceNerd_Carli @itsmorenamorena @mommade4change @Lupus_Chat My stepmom has been trying to get us to Barcelona for years. She loved it there. #LupusChat |
 | Laronica Conway @louisianagirl91 RT @TiffanyAndLupus: Welcome to #LupusChat! Today we’ll discuss our transition from diagnosis to acceptance so that we can better understand our new life with Chronic Illness. https://t.co/MvxYDnw1F6 |
 | Amanda G @LAlupusLady Amanda from Los Angeles, living with #lupus for almost 36 years. I'm going to Vegas in March to share "patient experience" at #HIMSS18 #LupusChat |
| #LupusChat @Lupus_Chat Everyone ready? Here comes Question 1! #LupusChat https://t.co/InjzqIjI50 |
| Carly by Nature @SynceNerd_Carli RT @sickysummie: I'm Summer from Seattle representing UCTD/lupus and I've had autoimmune stuff since 2005. I hope to travel to Baltimore this year to see a friend. #lupuschat |
| itsmorenamorena @itsmorenamorena @SynceNerd_Carli Thanks @SynceNerd_Carli 💜 I'm glad #LupusChat exists for us to connect! |
| RaquelRoschell @raquelonpurpose @SynceNerd_Carli 2nd wk in March for Arthritis United! #LupusChat |
| #LupusChat @Lupus_Chat Q1: Did you ever experience any indication of illness before receiving your official diagnosis? If yes, for how long? #LupusChat https://t.co/eA0xdmz2os |
| Tiffany ⁷ @TiffanyAndLupus Q1: Did you ever experience any indication of illness before receiving your official diagnosis? If yes, for how long? #LupusChat https://t.co/YyOK08w8JH |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @Lupus_Chat Ivey Janette,Albuquerque,DX'D with SLE/lupus nephritis 1995. Currently battling a flare. Planning to make a return visit to Philadelphia and New York later this year. #LupusChat |
 | Autoimmune Diseases @autoimmune_re RT @Lupus_Chat: ⏰⏰ Set your alarm and prepare your snacks! Our next #LupusChat starts in just 15 minutes at 3pm ET. Join us! https://t.co/a4PBeU6Nkg |
| #LupusChat @Lupus_Chat Q1: Alguna vez experimentó alguna indicación de enfermedad antes de recibir su diagnóstico oficial? Si es así, ¿por cuánto tiempo? #LupusChat https://t.co/Rp3LplSJYl |
| Carly by Nature @SynceNerd_Carli @sickysummie Welcome back to #LupusChat Summer. I haven't been to Baltimore for an extended stay for a few years but I pass through a few times a year. It's fun. |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Use Q1 or A1 to answer each question. This helps connect your responses to each question in our post-chat. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Everyone ready? Here comes Question 1! #LupusChat https://t.co/XF28wEa7ih |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Use the tag ~> #LupusChat in EACH of your tweets to join the conversation. We will share them with the online #lupus community! https://t.co/g2ghxfb6MV |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: There are a lot of different questions, concerns, and unknowns when newly diagnosed w/Chronic Illness. So today we’ll unpack those thoughts & share our experiences. #LupusChat https://t.co/k0f109bLhM |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Welcome to #LupusChat! Today we’ll discuss our transition from diagnosis to acceptance so that we can better understand our new life with Chronic Illness. https://t.co/K5QmTdSqfX |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Q1: Q1: Did you ever experience any indication of illness before receiving your official diagnosis? If yes, for how long? #LupusChat https://t.co/eA0xdmz2os |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Q1: Q1: Alguna vez experimentó alguna indicación de enfermedad antes de recibir su diagnóstico oficial? Si es así, ¿por cuánto tiempo? #LupusChat https://t.co/Rp3LplSJYl |
| RaquelRoschell @raquelonpurpose RT @Lupus_Chat: Q1: Q1: Did you ever experience any indication of illness before receiving your official diagnosis? If yes, for how long? #LupusChat https://t.co/eA0xdmz2os |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Use the tag ~> #LupusChat in EACH of your tweets to join the conversation. We will share them with the online #lupus community! https://t.co/g2ghxfb6MV |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Use the tag ~> #LupusChat in EACH of your tweets to join the conversation. We will share them with the online #lupus community! https://t.co/g2ghxfb6MV |
| Carly by Nature @SynceNerd_Carli @iveyjanette_207 @Lupus_Chat Welcome back to #LupusChat Ivey! Let us know when you're in NYC so we can plan a meet up! |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Q1: Q1: Did you ever experience any indication of illness before receiving your official diagnosis? If yes, for how long? #LupusChat https://t.co/eA0xdmz2os |
| RaquelRoschell @raquelonpurpose @Lupus_Chat Yes! For Years! All the tests came back "fine" - or inconclusive" #LupusChat |
| Carly by Nature @SynceNerd_Carli A1: Yes! I was diagnosed in 2011 but I experienced symptoms for some years prior. #LupusChat |
| Carly by Nature @SynceNerd_Carli A1: ¡Sí! Me diagnosticaron en 2011 pero tuve síntomas durante algunos años antes. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @SynceNerd_Carli @Lupus_Chat I will. Hoping to visit in November for my birthday. #LupusChat |
| Nae :) @heynaehey_ @Lupus_Chat A1: Yes, several months before I was diagnosed I carried all the symptoms of lupus. I ignored it because I thought that it was just me having lack of self care. When it got worst and unbearable, that's when I visited a doctor #LupusChat |
| Carly by Nature @SynceNerd_Carli A1: I believe the reason diagnosis took so long, is because I myself didn’t connect the signs and symptoms as being related. So I didn’t necessarily report them together. #LupusChat |
 | Bianca E Roman @biancaeroman @Lupus_Chat A1: I have always had indications of illness for years prior to my diagnosis. I was told to have had growing pains got years after I stopped growing. I was diagnosed with SFPN before my SLE diagnosis, which is a manifestation of SLE. #LupusChat |
| RaquelRoschell @raquelonpurpose RT @Lupus_Chat: Q1: Q1: Alguna vez experimentó alguna indicación de enfermedad antes de recibir su diagnóstico oficial? Si es así, ¿por cuánto tiempo? #LupusChat https://t.co/Rp3LplSJYl |
| Carly by Nature @SynceNerd_Carli A1: Creo que la razón por la cual el diagnóstico tardó tanto, es porque yo mismo no relacioné los signos y síntomas como relacionados. Entonces no necesariamente los reporté juntos. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @mommade4change: @Lupus_Chat Yes! For Years! All the tests came back "fine" - or inconclusive" #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A1: I can remember feeling join pain when I was in high school. It was so bad I took aleve almost daily. Hot flashes, fevers, hair loss, but I never put them all together. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A1: A1: I believe the reason diagnosis took so long, is because I myself didn’t connect the signs and symptoms as being related. So I didn’t necessarily report them together. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @missnaedotcom: @Lupus_Chat A1: @Lupus_Chat A1: Yes, several months before I was diagnosed I carried all the symptoms of lupus. I ignored it because I thought that it was just me having lack of self care. When it got worst and unbearable, that's when I visited a doctor #LupusChat |
| #LupusChat @Lupus_Chat RT @missnaedotcom: @Lupus_Chat A1: @Lupus_Chat A1: Yes, several months before I was diagnosed I carried all the symptoms of lupus. I ignored it because I thought that it was just me having lack of self care. When it got worst and unbearable, that's when I visited a doctor #LupusChat |
| #LupusChat @Lupus_Chat RT @mommade4change: @Lupus_Chat Yes! For Years! All the tests came back "fine" - or inconclusive" #LupusChat |
| #LupusChat @Lupus_Chat RT @biancaeroman: @Lupus_Chat A1: @Lupus_Chat A1: I have always had indications of illness for years prior to my diagnosis. I was told to have had growing pains got years after I stopped growing. I was diagnosed with SFPN before my SLE diagnosis, which is a manifestation of SLE. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A1: A1: Yes! I was diagnosed in 2011 but I experienced symptoms for some years prior. #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A1: A1: I can remember feeling join pain when I was in high school. It was so bad I took aleve almost daily. Hot flashes, fevers, hair loss, but I never put them all together. #LupusChat |
| #LupusChat @Lupus_Chat RT @iveyjanette_207: @Lupus_Chat Ivey Janette,Albuquerque,DX'D with SLE/lupus nephritis 1995. Currently battling a flare. Planning to make a return visit to Philadelphia and New York later this year. #LupusChat |
| Amanda G @LAlupusLady A1 Before diagnosis, i failed 10 "Mono tests' bc i bruised easily and was tired most of the time. 2 years then was sent to group therapy to deal w/ anxiety. I knew something was "off" #LupusChat 1/2 |
 | Jan Oldenburg ☮️ @janoldenburg RT @LAlupusLady: Amanda from Los Angeles, living with #lupus for almost 36 years. I'm going to Vegas in March to share "patient experience" at #HIMSS18 #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Q1: Q1: Did you ever experience any indication of illness before receiving your official diagnosis? If yes, for how long? #LupusChat https://t.co/eA0xdmz2os |
| Nae :) @heynaehey_ @TiffanyAndLupus One of the reasons I decided to go natural was because I thought it was relaxers taking out my hair, but it was lupus all along #LupusChat |
| Amanda G @LAlupusLady A1 the shrink told me to get a nose job the pre-op labs came back funny ~ 6 months later it was #lupus #LupusChat |
| #LupusChat @Lupus_Chat @biancaeroman Welcome Bianca! Thanks so much for joining us. Remember to use #LupusChat in each tweet so the community can see what you share. 💜 https://t.co/f7ihzJa0I0 |
| Tiffany ⁷ @TiffanyAndLupus A1: I remember the moment I finally decided to see a doctor about my joint pain in HS.....he accused me of being a medication/attention seeker. So I never sought for answers after that. #LupusChat |
| #LupusChat @Lupus_Chat #LupusChat https://t.co/zwUmL3f5SF |
| You cant fight the good fight if you're dead @sickysummie Yeah...for 11years. Then hand arthritis and tissue swelling began. #lupuschat |
| #LupusChat @Lupus_Chat RT @fjrascon: A1: |
 | Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q1: Q1: Did you ever experience any indication of illness before receiving your official diagnosis? If yes, for how long? #LupusChat https://t.co/eA0xdmz2os |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q1: Q1: Alguna vez experimentó alguna indicación de enfermedad antes de recibir su diagnóstico oficial? Si es así, ¿por cuánto tiempo? #LupusChat https://t.co/Rp3LplSJYl |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A1: A1: Creo que la razón por la cual el diagnóstico tardó tanto, es porque yo mismo no relacioné los signos y síntomas como relacionados. Entonces no necesariamente los reporté juntos. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Use the tag ~> #LupusChat in EACH of your tweets to join the conversation. We will share them with the online #lupus community! https://t.co/g2ghxfb6MV |
| #LupusChat @Lupus_Chat RT @sickysummie: Yeah...for 11years. Then hand arthritis and tissue swelling began. #lupuschat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A1: A1: I remember the moment I finally decided to see a doctor about my joint pain in HS.....he accused me of being a medication/attention seeker. So I never sought for answers after that. #LupusChat |
| #LupusChat @Lupus_Chat RT @missnaedotcom: @TiffanyAndLupus One of the reasons I decided to go natural was because I thought it was relaxers taking out my hair, but it was lupus all along #LupusChat |
| You cant fight the good fight if you're dead @sickysummie A1 #LupusChat |
| Caring For Lupus @CaringForLupus Hi Everyone, my name is Elizabeth, I’m co-host of #LupusChat. My daughter is a Lupus Warrior, she is ten years old. We would like to visit this year Spain. https://t.co/Iyw9dJkvr3 |
 | Dr. Ellen Andersen @politicablue It took about 18 months for me to get properly diagnosed with SLE after I started showing symptoms. #LupusChat |
| Carly by Nature @SynceNerd_Carli @AmyLBurns I've never been to New Orleans so I hope to make that a reality this year. Maui is divine. So relaxing. I want to eventually make it my home. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @sickysummie: Yeah...for 11years. Then hand arthritis and tissue swelling began. #lupuschat |
| Tiffany ⁷ @TiffanyAndLupus RT @fjrascon: A1: |
| Tiffany ⁷ @TiffanyAndLupus RT @SynceNerd_Carli: A1: A1: Yes! I was diagnosed in 2011 but I experienced symptoms for some years prior. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @mommade4change: @Lupus_Chat Yes! For Years! All the tests came back "fine" - or inconclusive" #LupusChat |
| itsmorenamorena @itsmorenamorena A1: yes, recurring joint pain, trouble breathing, lost my voice, started losing my mobility over a 3 year period before diagnosis #LupusChat https://t.co/NZzrQXkLkm |
| Tiffany ⁷ @TiffanyAndLupus RT @biancaeroman: @Lupus_Chat A1: @Lupus_Chat A1: I have always had indications of illness for years prior to my diagnosis. I was told to have had growing pains got years after I stopped growing. I was diagnosed with SFPN before my SLE diagnosis, which is a manifestation of SLE. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @missnaedotcom: @Lupus_Chat A1: @Lupus_Chat A1: Yes, several months before I was diagnosed I carried all the symptoms of lupus. I ignored it because I thought that it was just me having lack of self care. When it got worst and unbearable, that's when I visited a doctor #LupusChat |
| Carly by Nature @SynceNerd_Carli @itsmorenamorena Yes! Same here. #LupusChat |
| #LupusChat @Lupus_Chat RT @politicablue: It took about 18 months for me to get properly diagnosed with SLE after I started showing symptoms. #LupusChat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: Hi Everyone, my name is Elizabeth, I’m co-host of #LupusChat. My daughter is a Lupus Warrior, she is ten years old. We would like to visit this year Spain. https://t.co/Iyw9dJkvr3 |
| #LupusChat @Lupus_Chat RT @itsmorenamorena: A1: A1: yes, recurring joint pain, trouble breathing, lost my voice, started losing my mobility over a 3 year period before diagnosis #LupusChat https://t.co/NZzrQXkLkm |
| Caring For Lupus @CaringForLupus Hola a todos, mi nombre es Elizabeth, soy una co-anfitriona de #LupusChat. Mi hija es guerrera de Lupus, tiene diez años. Nos gustaría visitar este año España https://t.co/MbSsbq1x4D |
| Amy Burns @AmyBurnsBooks @Lupus_Chat A1: About 17yrs to get initial Dx. First flare was age 16, second flare @ age 28. Both mis-Dx. Never recovered from 2nd, but lost job and lost health insurance immediately which meant no seeing a doctor until I was around age 33. (Currently age 41) #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @CaringForLupus: Hi Everyone, my name is Elizabeth, I’m co-host of #LupusChat. My daughter is a Lupus Warrior, she is ten years old. We would like to visit this year Spain. https://t.co/Iyw9dJkvr3 |
| Carly by Nature @SynceNerd_Carli RT @itsmorenamorena: A1: A1: yes, recurring joint pain, trouble breathing, lost my voice, started losing my mobility over a 3 year period before diagnosis #LupusChat https://t.co/NZzrQXkLkm |
| Carly by Nature @SynceNerd_Carli RT @politicablue: It took about 18 months for me to get properly diagnosed with SLE after I started showing symptoms. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @Lupus_Chat A1. I had experienced fatigue and swelling for 5 years prior to my DX in 1995. And my weight went from 165 to 200. It was 5 years and lots of doctors and ER visits,plus 2 miscarriages before I finally found out what was happening to my body. #LupusChat |
| #LupusChat @Lupus_Chat It seems many of us experienced early signs that something “wasn’t right”. Let’s move on to what life has been like since diagnosis. #LupusChat https://t.co/NgA4tlA79i |
| Carly by Nature @SynceNerd_Carli RT @TiffanyAndLupus: A1: A1: I remember the moment I finally decided to see a doctor about my joint pain in HS.....he accused me of being a medication/attention seeker. So I never sought for answers after that. #LupusChat |
| Amanda G @LAlupusLady A1 every #lupus patient is unique and has their own story of diagnosis, care and treatment ~ it is important to realize we may not have the same story but we support one another. #LupusChat |
| #LupusChat @Lupus_Chat RT @AmyLBurns: @Lupus_Chat A1: @Lupus_Chat A1: About 17yrs to get initial Dx. First flare was age 16, second flare @ age 28. Both mis-Dx. Never recovered from 2nd, but lost job and lost health insurance immediately which meant no seeing a doctor until I was around age 33. (Currently age 41) #LupusChat |
| Carly by Nature @SynceNerd_Carli @biancaeroman @Lupus_Chat Welcome to #LupusChat Bianca!! |
| #LupusChat @Lupus_Chat RT @iveyjanette_207: @Lupus_Chat A1. I had experienced fatigue and swelling for 5 years prior to my DX in 1995. And my weight went from 165 to 200. It was 5 years and lots of doctors and ER visits,plus 2 miscarriages before I finally found out what was happening to my body. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Everyone ready? Here comes Question 1! #LupusChat https://t.co/XF28wEa7ih |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: It seems many of us experienced early signs that something “wasn’t right”. Let’s move on to what life has been like since diagnosis. #LupusChat https://t.co/NgA4tlA79i |
| Caring For Lupus @CaringForLupus A1. My daughter’s nails and toenails started to change, this was our first sign that something was going on. Then it was a rash on the face. After many many many doctor’s visit, the dermatologist decided to do a biopsy. I week later we get a call #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @fjrascon: A1: |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Everyone ready? Here comes Question 1! #LupusChat https://t.co/InjzqIjI50 |
| Tiffany ⁷ @TiffanyAndLupus RT @CaringForLupus: Hi Everyone, my name is Elizabeth, I’m co-host of #LupusChat. My daughter is a Lupus Warrior, she is ten years old. We would like to visit this year Spain. https://t.co/Iyw9dJkvr3 |
| Dr. Ellen Andersen @politicablue Ellen from Vermont. I’ve got SLE and several other diseases and disabilities. Thinking about visiting Quebec City this summer. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @AmyLBurns: @Lupus_Chat A1: @Lupus_Chat A1: About 17yrs to get initial Dx. First flare was age 16, second flare @ age 28. Both mis-Dx. Never recovered from 2nd, but lost job and lost health insurance immediately which meant no seeing a doctor until I was around age 33. (Currently age 41) #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: It seems many of us experienced early signs that something “wasn’t right”. Let’s move on to what life has been like since diagnosis. #LupusChat https://t.co/NgA4tlA79i |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: It seems many of us experienced early signs that something “wasn’t right”. Let’s move on to what life has been like since diagnosis. #LupusChat https://t.co/NgA4tlA79i |
| Tiffany ⁷ @TiffanyAndLupus Q2: When you received your diagnosis, did your physician provide you with literature or other resources about your Chronic Illness? #LupusChat https://t.co/YQvgKqJz0n |
| #LupusChat @Lupus_Chat Q2: When you received your diagnosis, did your physician provide you with literature or other resources about your Chronic Illness? #LupusChat https://t.co/2G4iPgXKVu |
| RaquelRoschell @raquelonpurpose RT @itsmorenamorena: A1: A1: yes, recurring joint pain, trouble breathing, lost my voice, started losing my mobility over a 3 year period before diagnosis #LupusChat https://t.co/NZzrQXkLkm |
| Amanda G @LAlupusLady @cassterlyrock @Lupus_Chat imagine living in a rural community, i lived in the Valley and it took me to get to a Dr. at Cedars to get diagnosed. #LupusChat |
| itsmorenamorena @itsmorenamorena @missnaedotcom @TiffanyAndLupus I've been #teamnatural seven years now and had had more trouble with my hair since I've been on lupus meds. Does your grow back? #LupusChat |
| Nae :) @heynaehey_ @iveyjanette_207 @Lupus_Chat Woooooowww!!! So sorry to hear about your lost in your miscarriages. 😔 you're such a warrior to experience all that. #LupusChat |
| RaquelRoschell @raquelonpurpose RT @SynceNerd_Carli: A1: A1: I believe the reason diagnosis took so long, is because I myself didn’t connect the signs and symptoms as being related. So I didn’t necessarily report them together. #LupusChat |
| Carly by Nature @SynceNerd_Carli @fjrascon Great point, Dr. Rascón! My diagnosis took longer because we hadn't connected the dots. I reported symptoms separately not knowing they were related. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @TiffanyAndLupus: A1: A1: I can remember feeling join pain when I was in high school. It was so bad I took aleve almost daily. Hot flashes, fevers, hair loss, but I never put them all together. #LupusChat |
| Caring For Lupus @CaringForLupus A1. Las uñas de mi hija comenzaron a cambiar, eso fue nuestra primera señal de que algo estaba pasando. Después una erupción rojiza en la cara. Después de muchas visitas a médicos, el dermatólogo decidió hacer una biopsia. Una semana más tarde recibimos una llamada #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Q2: Q2: When you received your diagnosis, did your physician provide you with literature or other resources about your Chronic Illness? #LupusChat https://t.co/2G4iPgXKVu |
| Carly by Nature @SynceNerd_Carli RT @politicablue: Ellen from Vermont. I’ve got SLE and several other diseases and disabilities. Thinking about visiting Quebec City this summer. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @sickysummie: Yeah...for 11years. Then hand arthritis and tissue swelling began. #lupuschat |
| Tiffany ⁷ @TiffanyAndLupus RT @SynceNerd_Carli: @fjrascon Great point, Dr. Rascón! My diagnosis took longer because we hadn't connected the dots. I reported symptoms separately not knowing they were related. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @itsmorenamorena: @missnaedotcom @TiffanyAndLupus I've been #teamnatural seven years now and had had more trouble with my hair since I've been on lupus meds. Does your grow back? #LupusChat |
| Caring For Lupus @CaringForLupus A1 #LupusChat, Cada caso es diferente. Algunos síntomas de Lupus son https://t.co/QFTpJeHg5R |
| Tiffany ⁷ @TiffanyAndLupus RT @politicablue: Ellen from Vermont. I’ve got SLE and several other diseases and disabilities. Thinking about visiting Quebec City this summer. #LupusChat |
| Carly by Nature @SynceNerd_Carli @politicablue Welcome to #LupusChat Ellen. Thanks for joining us today. Quebec is on my list too. I've never visited. |
| Carly by Nature @SynceNerd_Carli RT @CaringForLupus: A1. My daughter’s nails and toenails started to change, this was our first sign that something was going on. Then it was a rash on the face. After many many many doctor’s visit, the dermatologist decided to do a biopsy. I week later we get a call #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: It seems many of us experienced early signs that something “wasn’t right”. Let’s move on to what life has been like since diagnosis. #LupusChat https://t.co/NgA4tlA79i |
| Carly by Nature @SynceNerd_Carli RT @CaringForLupus: A1. Las uñas de mi hija comenzaron a cambiar, eso fue nuestra primera señal de que algo estaba pasando. Después una erupción rojiza en la cara. Después de muchas visitas a médicos, el dermatólogo decidió hacer una biopsia. Una semana más tarde recibimos una llamada #LupusChat |
| #LupusChat @Lupus_Chat @kirstyfay Hi Kirsty! No one will be able to see your tweets because your account is protected. #LupusChat |
| RaquelRoschell @raquelonpurpose @Lupus_Chat A2 : No. There were brochures in the exam room and a tv screen that ran commercials on certain meds but nothing for me to take home. Even with initial arthritis diagnosis which was by phone. #LupusChat |
| Carly by Nature @SynceNerd_Carli A2: I was very lucky. My first Rheumatologist provided me with documents and tried to explain Lupus to me as best she could. #LupusChat |
| #LupusChat @Lupus_Chat RT @fjrascon: |
| Carly by Nature @SynceNerd_Carli A2: Tuve mucha suerte. Mi primer reumatólogo me dio documentos e intentó explicarme el Lupus lo mejor que pudo. #LupusChat |
| #LupusChat @Lupus_Chat RT @itsmorenamorena: @missnaedotcom @TiffanyAndLupus I've been #teamnatural seven years now and had had more trouble with my hair since I've been on lupus meds. Does your grow back? #LupusChat |
| Nae :) @heynaehey_ @itsmorenamorena Unfortunately while I was on the meds my hair had a very difficult time growing. So I went cold turkey on the meds for almost 2 years just so I could have some of my life back..lol. I'm back on the meds now and I'm hoping my dreads will continue to grow.😣 #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A2: A2: I was very lucky. My first Rheumatologist provided me with documents and tried to explain Lupus to me as best she could. #LupusChat |
| #LupusChat @Lupus_Chat RT @mommade4change: @Lupus_Chat A2 : @Lupus_Chat A2 : No. There were brochures in the exam room and a tv screen that ran commercials on certain meds but nothing for me to take home. Even with initial arthritis diagnosis which was by phone. #LupusChat |
| Carly by Nature @SynceNerd_Carli A2: Initially because of what I now recognize as denial, I didn’t really pay much attention to the brochures and read a little at a time. Then one day I decided to read everything. #LupusChat |
| Carly by Nature @SynceNerd_Carli A2: Inicialmente debido a lo que ahora reconozco como negación, en realidad no presté mucha atención a los folletos y leí un poco a la vez. Entonces, un día, decidí leer todo. #LupusChat |
| Amanda G @LAlupusLady A2 After the prolonged tests to rule out cancer, Leukemia and anemia then sent to a psychiatrist and a plastic surgeon, my Dr. tried to explain what I had and would be dealing with and gave me a "book mark" from @LupusOrg #LupusChat |
| You cant fight the good fight if you're dead @sickysummie A2: I'd educated myself already trying to figure out what was wrong. Rheumy did teach me how to pronounce seronegative spondyloarthropathy, my inital dx. #lupuschat |
| Carly by Nature @SynceNerd_Carli A2: Once I accepted my diagnosis, I asked my doctor for more information. She happily provided me with the latest research articles, brochures, and we communicated often by email. #LupusChat |
| Carly by Nature @SynceNerd_Carli A2: Una vez que acepté mi diagnóstico, le pedí más información a mi médico. Ella felizmente me proporcionó los últimos artículos de investigación, folletos, y nos comunicamos a menudo por correo electrónico. #LupusChat |
| itsmorenamorena @itsmorenamorena A2: Yes, but I got most of my info from other sources like @LupusOrg. My Internist offered better initial support than my Rheumy. #LupusChat https://t.co/KfIfHSvMyj |
| Tiffany ⁷ @TiffanyAndLupus A2: Thinking back, I think my rheumatologist gave me a printout with basic information about what lupus was. She definitely didn't tell me there were local lupus orgs in my city. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Q2: Q2: When you received your diagnosis, did your physician provide you with literature or other resources about your Chronic Illness? #LupusChat https://t.co/2G4iPgXKVu |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A2: A2: Thinking back, I think my rheumatologist gave me a printout with basic information about what lupus was. She definitely didn't tell me there were local lupus orgs in my city. #LupusChat |
| #LupusChat @Lupus_Chat RT @itsmorenamorena: A2: A2: Yes, but I got most of my info from other sources like @LupusOrg. My Internist offered better initial support than my Rheumy. #LupusChat https://t.co/KfIfHSvMyj |
| #LupusChat @Lupus_Chat RT @fjrascon: |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A2: A2: Una vez que acepté mi diagnóstico, le pedí más información a mi médico. Ella felizmente me proporcionó los últimos artículos de investigación, folletos, y nos comunicamos a menudo por correo electrónico. #LupusChat |
| #LupusChat @Lupus_Chat RT @sickysummie: A2: A2: I'd educated myself already trying to figure out what was wrong. Rheumy did teach me how to pronounce seronegative spondyloarthropathy, my inital dx. #lupuschat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A2: A2: Once I accepted my diagnosis, I asked my doctor for more information. She happily provided me with the latest research articles, brochures, and we communicated often by email. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A2: A2: Initially because of what I now recognize as denial, I didn’t really pay much attention to the brochures and read a little at a time. Then one day I decided to read everything. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A2: A2: Inicialmente debido a lo que ahora reconozco como negación, en realidad no presté mucha atención a los folletos y leí un poco a la vez. Entonces, un día, decidí leer todo. #LupusChat |
| Caring For Lupus @CaringForLupus A1 #LupusChat, según @LupusOrg Un promedio, toma casi seis años diagnosticar a las personas con Lupus, desde el momento en que notan por primera vez sus síntomas de lupus https://t.co/MU8IWpasHl |
| Bianca E Roman @biancaeroman @Lupus_Chat A2: I have a background in science so I kind of knew mostly all of what I needed to know. Years of suspecting diagnosis created the urge to research it thoroughly. When diagnosed with other chronic illnesses was told about connection to SLE. #LupusChat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A1. Las uñas de mi hija comenzaron a cambiar, eso fue nuestra primera señal de que algo estaba pasando. Después una erupción rojiza en la cara. Después de muchas visitas a médicos, el dermatólogo decidió hacer una biopsia. Una semana más tarde recibimos una llamada #LupusChat |
| Meg Nunez @Megisflying @Lupus_Chat A1 yes. A stroke in my 20s, numerous rashes, malar rashes, Pain. 25 years before dx! #LupusChat |
| #LupusChat @Lupus_Chat RT @politicablue: Ellen from Vermont. I’ve got SLE and several other diseases and disabilities. Thinking about visiting Quebec City this summer. #LupusChat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A1. My daughter’s nails and toenails started to change, this was our first sign that something was going on. Then it was a rash on the face. After many many many doctor’s visit, the dermatologist decided to do a biopsy. I week later we get a call #LupusChat |
| #LupusChat @Lupus_Chat It is important when newly diagnosed to receive both facts and guidance from our Health Care Professionals. We’ll explore this more, next! #LupusChat https://t.co/xSxaiOzTo8 |
| #LupusChat @Lupus_Chat Parece que muchos de nosotros experimentamos señales tempranas de que algo "no estaba bien". Pasemos a cómo ha sido la vida desde el diagnóstico. #LupusChat https://t.co/iE4bsqCi8o |
| #LupusChat @Lupus_Chat Q2: ¿Cuándo recibió su diagnóstico, su médico le proporcionó folletos u otros recursos sobre su enfermedad crónica? #LupusChat https://t.co/7nfIiaa905 |
| #LupusChat @Lupus_Chat RT @Megisflying: @Lupus_Chat A1 yes. A stroke in my 20s, numerous rashes, malar rashes, Pain. 25 years before dx! #LupusChat |
| Nae :) @heynaehey_ @Lupus_Chat A2: My Rhuemy was very nice, especially since I didn't know what lupus was. He gave me plenty of literature and warned me to NOT seek the internet for resources because it was mostly negative. When he said that, I freaked out and researched anyways #LupusChat |
| #LupusChat @Lupus_Chat RT @biancaeroman: @Lupus_Chat A2: @Lupus_Chat A2: I have a background in science so I kind of knew mostly all of what I needed to know. Years of suspecting diagnosis created the urge to research it thoroughly. When diagnosed with other chronic illnesses was told about connection to SLE. #LupusChat |
| #LupusChat @Lupus_Chat RT @fjrascon: |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A1 #LupusChat, según @LupusOrg Un promedio, toma casi seis años diagnosticar a las personas con Lupus, desde el momento en que notan por primera vez sus síntomas de lupus https://t.co/MU8IWpasHl |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @Lupus_Chat A2. My PCP did not. My nephrologist gave me some literature and told me about the Lupus Foundation. That was it. 23 years ago. #LupusChat |
| #LupusChat @Lupus_Chat RT @missnaedotcom: @Lupus_Chat A2: @Lupus_Chat A2: My Rhuemy was very nice, especially since I didn't know what lupus was. He gave me plenty of literature and warned me to NOT seek the internet for resources because it was mostly negative. When he said that, I freaked out and researched anyways #LupusChat |
| #LupusChat @Lupus_Chat RT @JDestiny58: |
| #LupusChat @Lupus_Chat RT @iveyjanette_207: @Lupus_Chat A2. My PCP did not. My nephrologist gave me some literature and told me about the Lupus Foundation. That was it. 23 years ago. #LupusChat |
| RaquelRoschell @raquelonpurpose RT @SynceNerd_Carli: A2: A2: I was very lucky. My first Rheumatologist provided me with documents and tried to explain Lupus to me as best she could. #LupusChat |
| Amy Burns @AmyBurnsBooks @Lupus_Chat A2: I was provided w/ tons of information about the illness & medication options, but not emotional support for the trauma and loss - I felt so sick and I was terrified of all the things that could go wrong. #LupusChat |
| #LupusChat @Lupus_Chat RT @AmyLBurns: @Lupus_Chat A2: @Lupus_Chat A2: I was provided w/ tons of information about the illness & medication options, but not emotional support for the trauma and loss - I felt so sick and I was terrified of all the things that could go wrong. #LupusChat |
| RaquelRoschell @raquelonpurpose RT @SynceNerd_Carli: A2: A2: Initially because of what I now recognize as denial, I didn’t really pay much attention to the brochures and read a little at a time. Then one day I decided to read everything. #LupusChat |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: It is important when newly diagnosed to receive both facts and guidance from our Health Care Professionals. We’ll explore this more, next! #LupusChat https://t.co/xSxaiOzTo8 |
| #LupusChat @Lupus_Chat Q3: Do you have any specific expectations of your Rheumatologist or Physician? #LupusChat https://t.co/idGI3YMXK3 |
| Tiffany ⁷ @TiffanyAndLupus Q3: Do you have any specific expectations of your Rheumatologist or Physician? #LupusChat https://t.co/rDrfQYJPlJ |
| Bianca E Roman @biancaeroman @iveyjanette_207 @Lupus_Chat Hi Ivey, my nephrologist was so helpful as well. He provided me with resources online, and other literature to review! #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: It is important when newly diagnosed to receive both facts and guidance from our Health Care Professionals. We’ll explore this more, next! #LupusChat https://t.co/xSxaiOzTo8 |
| Meg Nunez @Megisflying @Lupus_Chat A2 yes and started me on plaquenil, then methotrexate. All w literature that I received in his office. #lupuschat |
| Tiffany ⁷ @TiffanyAndLupus @missnaedotcom I have a theory that the years and years of putting strong chemical relaxers on our scalps could have later triggered an autoimmune response. #LupusChat |
 | Nikki †♡☾• ˚ @Nicolette_BABEY Itching, losing hair, & fatigue for 7 months #LupusChat https://t.co/iD763O0yu1 |
| Carly by Nature @SynceNerd_Carli @fjrascon Totalmente cierto. Mi reumatólogo sabía que yo trabajaba en Ciencias en ese momento y fue tan amable de compartir los artículos que pude leer. Pero clínicamente mi plan se adaptó a mis necesidades. #LupusChat |
| Nae :) @heynaehey_ @Lupus_Chat A3: Yes...Tell me like it is, don't sugar coat anything, and please don't waste my time with words or terms you know I don't understand.😉 #LupusChat |
| #LupusChat @Lupus_Chat RT @Megisflying: @Lupus_Chat A2 yes and started me on plaquenil, then methotrexate. All w literature that I received in his office. #lupuschat |
| #LupusChat @Lupus_Chat RT @biancaeroman: @iveyjanette_207 @Lupus_Chat Hi Ivey, my nephrologist was so helpful as well. He provided me with resources online, and other literature to review! #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Megisflying: @Lupus_Chat A2 yes and started me on plaquenil, then methotrexate. All w literature that I received in his office. #lupuschat |
| #LupusChat @Lupus_Chat RT @Nicolette_BABEY: Itching, losing hair, & fatigue for 7 months #LupusChat https://t.co/iD763O0yu1 |
| Carly by Nature @SynceNerd_Carli RT @biancaeroman: @iveyjanette_207 @Lupus_Chat Hi Ivey, my nephrologist was so helpful as well. He provided me with resources online, and other literature to review! #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Q3: Q3: Do you have any specific expectations of your Rheumatologist or Physician? #LupusChat https://t.co/idGI3YMXK3 |
| Meg Nunez @Megisflying @Lupus_Chat A3 yes as he’s the professional and trained in my illness I’d hope he’d be up to date. Knows the tests that need to be ordered and meds to take #lupuschat |
| itsmorenamorena @itsmorenamorena This! #LupusChat https://t.co/TrHu1Nc317 |
| Carly by Nature @SynceNerd_Carli @kariZenun @Lupus_Chat Very true! I didn't initially seek out interaction with other patients but it really has been paramount. I'm so happy I finally did. Sharing experiences is helpful on this journey. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A3: The expectations I have for all of my physicians is pretty basic. There must be mutual respect, communication w/me & other specialists, must share decision making. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @fjrascon: |
| #LupusChat @Lupus_Chat RT @Megisflying: @Lupus_Chat A3 yes as he’s the professional and trained in my illness I’d hope he’d be up to date. Knows the tests that need to be ordered and meds to take #lupuschat |
| #LupusChat @Lupus_Chat RT @fjrascon: |
| Carly by Nature @SynceNerd_Carli RT @Megisflying: @Lupus_Chat A3 yes as he’s the professional and trained in my illness I’d hope he’d be up to date. Knows the tests that need to be ordered and meds to take #lupuschat |
| Carly by Nature @SynceNerd_Carli RT @missnaedotcom: @Lupus_Chat A3: @Lupus_Chat A3: Yes...Tell me like it is, don't sugar coat anything, and please don't waste my time with words or terms you know I don't understand.😉 #LupusChat |
| #LupusChat @Lupus_Chat RT @missnaedotcom: @Lupus_Chat A3: @Lupus_Chat A3: Yes...Tell me like it is, don't sugar coat anything, and please don't waste my time with words or terms you know I don't understand.😉 #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Nicolette_BABEY: Itching, losing hair, & fatigue for 7 months #LupusChat https://t.co/iD763O0yu1 |
| Dr. Ellen Andersen @politicablue A3. My favorite rheumatologist retired last year — she functionally acted as my primary care physician for all things weird. I’m still figuring out relationship with new lupus doc. #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A3: A3: The expectations I have for all of my physicians is pretty basic. There must be mutual respect, communication w/me & other specialists, must share decision making. #LupusChat |
| Nae :) @heynaehey_ @TiffanyAndLupus Your....theory...can...be...the...most...facinating...thing...Ive...ever....heard!!!!! I strongly believe our bodies react to certain things we put in and on it. #LupusChat https://t.co/fSQQgfdm9b |
| Carly by Nature @SynceNerd_Carli A3: I do. I’ll admit, my first Rheumatologist set the bar very high. And the good thing is, she is my current Rheumatologist’s boss. So I know she is being taught well. #LupusChat |
| Carly by Nature @SynceNerd_Carli A3: lo hago. Debo admitir que mi primer reumatólogo puso el listón muy alto. Y lo bueno es que ella es la actual jefa de reumatólogos. Entonces sé que ella está siendo enseñada bien. #LupusChat |
 | Monique @Uniquely_Poised Hi Monique from Maryland was diagnosed with Lupus in1998 symtoms I encountered was the butterfly rash on the face. Which we know lupus brings on so many things. I would love to go to Paris but planning on goin to NY this summer.#Lupuschat |
| RaquelRoschell @raquelonpurpose @Lupus_Chat A3 I expect my physician to genuinely care, to be knowledgeable and open to what I say. #LupusChat |
| Carly by Nature @SynceNerd_Carli A3: I expect my doctors to be understanding, empathetic, and have a sense of urgency about not only treating my illness but also improving my quality of life. #LupusChat |
| #LupusChat @Lupus_Chat Communication with our physicians is crucial. We’ll discuss communicating our https://t.co/n4kkqeo8ZZ Question 4. #LupusChat https://t.co/8gwMooPQp4 |
| Carly by Nature @SynceNerd_Carli A3: Espero que mis médicos sean comprensivos, empáticos y tengan un sentido de urgencia no solo para tratar mi enfermedad sino también para mejorar mi calidad de vida. #LupusChat |
| Amanda G @LAlupusLady A3 i expect the Dr. (whether a Rheumie, Dermie, Gastro or Internist) to provide treatment and care to me as a patient and communicate the healthcare plan with me. #LupusChat https://t.co/xduoRO2VHK |
| Carly by Nature @SynceNerd_Carli A3: It is very important to me that my doctors be abreast of the current research in their respective fields. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @CaringForLupus: A1 #LupusChat, Cada caso es diferente. Algunos síntomas de Lupus son https://t.co/QFTpJeHg5R |
| Tiffany ⁷ @TiffanyAndLupus RT @Megisflying: @Lupus_Chat A3 yes as he’s the professional and trained in my illness I’d hope he’d be up to date. Knows the tests that need to be ordered and meds to take #lupuschat |
| Tiffany ⁷ @TiffanyAndLupus RT @fjrascon: |
| Tiffany ⁷ @TiffanyAndLupus RT @Nicolette_BABEY: Itching, losing hair, & fatigue for 7 months #LupusChat https://t.co/iD763O0yu1 |
| Tiffany ⁷ @TiffanyAndLupus RT @missnaedotcom: @Lupus_Chat A3: @Lupus_Chat A3: Yes...Tell me like it is, don't sugar coat anything, and please don't waste my time with words or terms you know I don't understand.😉 #LupusChat |
| Carly by Nature @SynceNerd_Carli A3: Es muy importante para mí que mis médicos estén al tanto de la investigación actual en sus respectivos campos. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @Megisflying: @Lupus_Chat A2 yes and started me on plaquenil, then methotrexate. All w literature that I received in his office. #lupuschat |
| Tiffany ⁷ @TiffanyAndLupus RT @biancaeroman: @iveyjanette_207 @Lupus_Chat Hi Ivey, my nephrologist was so helpful as well. He provided me with resources online, and other literature to review! #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @AmyLBurns: @Lupus_Chat A2: @Lupus_Chat A2: I was provided w/ tons of information about the illness & medication options, but not emotional support for the trauma and loss - I felt so sick and I was terrified of all the things that could go wrong. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @JDestiny58: |
| Tiffany ⁷ @TiffanyAndLupus RT @iveyjanette_207: @Lupus_Chat A2. My PCP did not. My nephrologist gave me some literature and told me about the Lupus Foundation. That was it. 23 years ago. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @CaringForLupus: A1 #LupusChat, según @LupusOrg Un promedio, toma casi seis años diagnosticar a las personas con Lupus, desde el momento en que notan por primera vez sus síntomas de lupus https://t.co/MU8IWpasHl |
| Tiffany ⁷ @TiffanyAndLupus RT @missnaedotcom: @Lupus_Chat A2: @Lupus_Chat A2: My Rhuemy was very nice, especially since I didn't know what lupus was. He gave me plenty of literature and warned me to NOT seek the internet for resources because it was mostly negative. When he said that, I freaked out and researched anyways #LupusChat |
| Carly by Nature @SynceNerd_Carli @politicablue Will do! Our #LupusChat founder @TiffanyAndLupus is enjoying that city right now! |
| You cant fight the good fight if you're dead @sickysummie A3: I need a rheumy who 1) believes me, 2) knows how to treat me. Difficult to find with atypical seroneg disease! #lupuschat |
| #LupusChat @Lupus_Chat RT @mommade4change: @Lupus_Chat A3 I expect my physician to genuinely care, to be knowledgeable and open to what I say. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @biancaeroman @SynceNerd_Carli @Lupus_Chat I had two wonderful nephrologists when I lived in LA. They were so helpful in providing resources and getting medication for me. I saw them even after I moved here to Albuquerque and established a team of doctors. #LupusChat |
| RaquelRoschell @raquelonpurpose RT @missnaedotcom: @Lupus_Chat A3: @Lupus_Chat A3: Yes...Tell me like it is, don't sugar coat anything, and please don't waste my time with words or terms you know I don't understand.😉 #LupusChat |
| #LupusChat @Lupus_Chat RT @JDestiny58: |
| RaquelRoschell @raquelonpurpose @missnaedotcom @Lupus_Chat Definitely! #LupusChat |
| #LupusChat @Lupus_Chat Q4: Under what circumstances should you alert your doctor immediately and/or go to the Emergency Room? #LupusChat https://t.co/9HwiKJr7dk |
| Tiffany ⁷ @TiffanyAndLupus Q4: Under what circumstances should you alert your doctor immediately and/or go to the Emergency Room? #LupusChat https://t.co/bcjpYuIzzt |
| #LupusChat @Lupus_Chat A1 #LupusChat https://t.co/02DRm0A08o |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Q3: Q3: Do you have any specific expectations of your Rheumatologist or Physician? #LupusChat https://t.co/idGI3YMXK3 |
| #LupusChat @Lupus_Chat @SynceNerd_Carli @politicablue @TiffanyAndLupus Yup! I try to visit Montréal at least twice a year. Currently there now haha! #LupusChat |
| #LupusChat @Lupus_Chat @Pukichito Welcome Nadia! Thanks for joining us and sharing. Be sure to use #LupusChat in each of your tweets so the community can see them. 💜 https://t.co/DDarIjMkKC |
| #LupusChat @Lupus_Chat RT @fjrascon: A3: |
| #LupusChat @Lupus_Chat RT @sickysummie: A3: A3: I need a rheumy who 1) believes me, 2) knows how to treat me. Difficult to find with atypical seroneg disease! #lupuschat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A3: A3: It is very important to me that my doctors be abreast of the current research in their respective fields. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @Lupus_Chat A3. Explain EVERYTHING! And listen to my questions. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A3: A3: Es muy importante para mí que mis médicos estén al tanto de la investigación actual en sus respectivos campos. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A3: A3: I expect my doctors to be understanding, empathetic, and have a sense of urgency about not only treating my illness but also improving my quality of life. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A3: A3: Espero que mis médicos sean comprensivos, empáticos y tengan un sentido de urgencia no solo para tratar mi enfermedad sino también para mejorar mi calidad de vida. #LupusChat |
| #LupusChat @Lupus_Chat RT @Uniquely_Poised: Hi Monique from Maryland was diagnosed with Lupus in1998 symtoms I encountered was the butterfly rash on the face. Which we know lupus brings on so many things. I would love to go to Paris but planning on goin to NY this summer.#Lupuschat |
| #LupusChat @Lupus_Chat Es importante cuando a sido recientemente diagnosticado recibir tanto los información como la orientación de nuestros profesionales de atención médica. ¡Exploraremos esto más, con el próximo! #LupusChat https://t.co/mWnaOKEvmB |
| #LupusChat @Lupus_Chat Q3: ¿Tiene alguna expectativa específica de su reumatólogo o médico? #LupusChat https://t.co/LOg6rcCI3D |
| #LupusChat @Lupus_Chat La comunicación con nuestros médicos es crucial. Discutiremos sobre la comunicación de nuestros síntomas en Pregunta 4. #LupusChat https://t.co/ZBYNidum7J |
| #LupusChat @Lupus_Chat @Uniquely_Poised Welcome to #LupusChat Monique! Thanks for joining us today! 💜 |
| RaquelRoschell @raquelonpurpose RT @sickysummie: Yeah...for 11years. Then hand arthritis and tissue swelling began. #lupuschat |
| #LupusChat @Lupus_Chat Q4: ¿Bajo qué circunstancias usted debe llamar a su médico inmediatamente y / o ir a la sala de emergencias? #LupusChat https://t.co/jmIMXNBp78 |
| Amy Burns @AmyBurnsBooks @Lupus_Chat A3: I know what to expect from my Rheumatologist so don't have high expectations. I know she's on big pharma team, twists my words, but will sort of hear me. So, I do my own research afterward, & consult with my primary care provider who really understands my body. #LupusChat |
| #LupusChat @Lupus_Chat RT @politicablue: A3. My favorite rheumatologist retired last year — she functionally acted as my primary care physician for all things weird. I’m still figuring out relationship with new lupus doc. #LupusChat |
| #LupusChat @Lupus_Chat RT @iveyjanette_207: @Lupus_Chat A3. Explain EVERYTHING! And listen to my questions. #LupusChat |
 | Anthony @Howna RT @Nicolette_BABEY: Itching, losing hair, & fatigue for 7 months #LupusChat https://t.co/iD763O0yu1 |
| itsmorenamorena @itsmorenamorena RT @LAlupusLady: A3 i expect the Dr. (whether a Rheumie, Dermie, Gastro or Internist) to provide treatment and care to me as a patient and communicate the healthcare plan with me. #LupusChat https://t.co/xduoRO2VHK |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: @Pukichito Welcome Nadia! Thanks for joining us and sharing. Be sure to use #LupusChat in each of your tweets so the community can see them. 💜 https://t.co/DDarIjMkKC |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q2: Q2: ¿Cuándo recibió su diagnóstico, su médico le proporcionó folletos u otros recursos sobre su enfermedad crónica? #LupusChat https://t.co/7nfIiaa905 |
| Tiffany ⁷ @TiffanyAndLupus RT @fjrascon: A3: |
| itsmorenamorena @itsmorenamorena RT @SynceNerd_Carli: A3: A3: I expect my doctors to be understanding, empathetic, and have a sense of urgency about not only treating my illness but also improving my quality of life. #LupusChat |
| #LupusChat @Lupus_Chat RT @AmyLBurns: @Lupus_Chat A3: @Lupus_Chat A3: I know what to expect from my Rheumatologist so don't have high expectations. I know she's on big pharma team, twists my words, but will sort of hear me. So, I do my own research afterward, & consult with my primary care provider who really understands my body. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q2: Q2: When you received your diagnosis, did your physician provide you with literature or other resources about your Chronic Illness? #LupusChat https://t.co/2G4iPgXKVu |
| Caring For Lupus @CaringForLupus A2. Well we did brochures, and printouts. The appointment was relatively quick. Because we didn't know anything about Lupus we didn't exactly know what to ask or what to expect. #LupusChat |
 | Tinu Abayomi-Paul @Tinu RT @Lupus_Chat: Q3: Q3: Do you have any specific expectations of your Rheumatologist or Physician? #LupusChat https://t.co/idGI3YMXK3 |
| Carly by Nature @SynceNerd_Carli RT @AmyLBurns: @Lupus_Chat A3: @Lupus_Chat A3: I know what to expect from my Rheumatologist so don't have high expectations. I know she's on big pharma team, twists my words, but will sort of hear me. So, I do my own research afterward, & consult with my primary care provider who really understands my body. #LupusChat |
| Caring For Lupus @CaringForLupus A2. Bueno, la Reumatologa nos dio folletos y documentos. La cita fue relativamente rápida. Como no sabíamos nada sobre Lupus, no sabíamos exactamente qué preguntar o qué esperar. #LupusChat |
| Caring For Lupus @CaringForLupus A2. Different resources were provided to us: #Lupus #LupusChat https://t.co/snppvjs8Zw https://t.co/71atTHjEq5 |
| Carly by Nature @SynceNerd_Carli RT @sickysummie: A3: A3: I need a rheumy who 1) believes me, 2) knows how to treat me. Difficult to find with atypical seroneg disease! #lupuschat |
| Carly by Nature @SynceNerd_Carli RT @JDestiny58: |
| Monique @Uniquely_Poised RT @CaringForLupus: A1. My daughter’s nails and toenails started to change, this was our first sign that something was going on. Then it was a rash on the face. After many many many doctor’s visit, the dermatologist decided to do a biopsy. I week later we get a call #LupusChat |
| Carly by Nature @SynceNerd_Carli A4: Anytime my temperature is higher than its normal range. While low fever is a symptom of Lupus, fevers are also a sign of infection and should not be taken lightly. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus @fjrascon A3: THIS! I am totally ok with my Doctor not knowing something. Medical research advances everyday it's hard to keep up. I respect it & appreciate when they ask their peers for input. #LupusChat |
| Carly by Nature @SynceNerd_Carli A4: Cada vez que mi temperatura es más alta que su rango normal. Si bien la fiebre baja es un síntoma del lupus, las fiebres también son un signo de infección y no deben tomarse a la ligera. #LupusChat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A2. Different resources were provided to us: #Lupus #LupusChat https://t.co/snppvjs8Zw https://t.co/71atTHjEq5 |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A4: A4: Anytime my temperature is higher than its normal range. While low fever is a symptom of Lupus, fevers are also a sign of infection and should not be taken lightly. #LupusChat |
| Carly by Nature @SynceNerd_Carli A4: Also, if I am in immense pain and nothing is working. If I have major swelling in my legs and ankles (because of Nephritis). And if there is any pain from Raynaud’s #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @CaringForLupus: A2. Different resources were provided to us: #Lupus #LupusChat https://t.co/snppvjs8Zw https://t.co/71atTHjEq5 |
| Tiffany ⁷ @TiffanyAndLupus RT @CaringForLupus: A2. Well we did brochures, and printouts. The appointment was relatively quick. Because we didn't know anything about Lupus we didn't exactly know what to ask or what to expect. #LupusChat |
| Carly by Nature @SynceNerd_Carli A4: También, si estoy en un dolor inmenso y nada funciona. Si tengo una hinchazón importante en las piernas y los tobillos (debido a la nefritis). Y si hay algún dolor por parte de Raynaud. #LupusChat |
| Monique @Uniquely_Poised RT @SynceNerd_Carli: A4: A4: Anytime my temperature is higher than its normal range. While low fever is a symptom of Lupus, fevers are also a sign of infection and should not be taken lightly. #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: @fjrascon A3: @fjrascon A3: THIS! I am totally ok with my Doctor not knowing something. Medical research advances everyday it's hard to keep up. I respect it & appreciate when they ask their peers for input. #LupusChat |
| Carly by Nature @SynceNerd_Carli A4: Of course, if there is an emergent issue like vomiting, chest pain, etc. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A4: A4: Cada vez que mi temperatura es más alta que su rango normal. Si bien la fiebre baja es un síntoma del lupus, las fiebres también son un signo de infección y no deben tomarse a la ligera. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q3: Q3: Do you have any specific expectations of your Rheumatologist or Physician? #LupusChat https://t.co/idGI3YMXK3 |
| #LupusChat @Lupus_Chat RT @fjrascon: A4: |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A4: A4: Also, if I am in immense pain and nothing is working. If I have major swelling in my legs and ankles (because of Nephritis). And if there is any pain from Raynaud’s #LupusChat |
| Nae :) @heynaehey_ @Lupus_Chat A4: I hate https://t.co/mnPvf7mG98 never know when you need to go to the ER. Its like we build a high tolerence of pain. It finally gets unbearable, you convince yourself to go & they tell you they can't find anything. You're mad & disappointed & wasted time & money. #LupusChat |
| Carly by Nature @SynceNerd_Carli A4: Por supuesto, si hay un problema emergente como vómitos, dolor en el pecho, etc. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q3: Q3: ¿Tiene alguna expectativa específica de su reumatólogo o médico? #LupusChat https://t.co/LOg6rcCI3D |
| Carly by Nature @SynceNerd_Carli RT @fjrascon: A4: |
| Carly by Nature @SynceNerd_Carli RT @TiffanyAndLupus: @fjrascon A3: @fjrascon A3: THIS! I am totally ok with my Doctor not knowing something. Medical research advances everyday it's hard to keep up. I respect it & appreciate when they ask their peers for input. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @CaringForLupus: A2. Different resources were provided to us: #Lupus #LupusChat https://t.co/snppvjs8Zw https://t.co/71atTHjEq5 |
| Carly by Nature @SynceNerd_Carli RT @CaringForLupus: A2. Bueno, la Reumatologa nos dio folletos y documentos. La cita fue relativamente rápida. Como no sabíamos nada sobre Lupus, no sabíamos exactamente qué preguntar o qué esperar. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @CaringForLupus: A2. Well we did brochures, and printouts. The appointment was relatively quick. Because we didn't know anything about Lupus we didn't exactly know what to ask or what to expect. #LupusChat |
| #LupusChat @Lupus_Chat Great answers! Now let’s dig deeper. We’re discussing how we manage our emotions surrounding Chronic Illness, next! #LupusChat https://t.co/kbbedUBRmr |
| Carly by Nature @SynceNerd_Carli RT @missnaedotcom: @Lupus_Chat A4: @Lupus_Chat A4: I hate https://t.co/mnPvf7mG98 never know when you need to go to the ER. Its like we build a high tolerence of pain. It finally gets unbearable, you convince yourself to go & they tell you they can't find anything. You're mad & disappointed & wasted time & money. #LupusChat |
| Caring For Lupus @CaringForLupus A3. On the first appointment I expected the Rheumatologist to explain what is Lupus, the symptoms, to provide some kind of guidance. #LupusChat |
| Caring For Lupus @CaringForLupus A3. En la primera cita esperé que el reumatólogo explicara qué es el lupus, los síntomas, para proporcionar algún tipo de orientación. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Q4: Q4: Under what circumstances should you alert your doctor immediately and/or go to the Emergency Room? #LupusChat https://t.co/9HwiKJr7dk |
| Tiffany ⁷ @TiffanyAndLupus RT @Lupus_Chat: Great answers! Now let’s dig deeper. We’re discussing how we manage our emotions surrounding Chronic Illness, next! #LupusChat https://t.co/kbbedUBRmr |
| Amanda G @LAlupusLady A4 every #lupus patient is different ~ we know our bodies best but call your Dr. at the first sign of a "flare" so you and your HCP can track the symptoms together, but don't wait... #LupusChat https://t.co/WX0oO90B3B |
| Caring For Lupus @CaringForLupus A3. Nowadays I expect my daughter’s Rheumatologist and other specialist to acknowledge my daughter’s symptoms. I take pictures, videos to the appointments so they can see and understand what she goes through #LupusChat |
| #LupusChat @Lupus_Chat RT @missnaedotcom: @Lupus_Chat A4: @Lupus_Chat A4: I hate https://t.co/mnPvf7mG98 never know when you need to go to the ER. Its like we build a high tolerence of pain. It finally gets unbearable, you convince yourself to go & they tell you they can't find anything. You're mad & disappointed & wasted time & money. #LupusChat |
| #LupusChat @Lupus_Chat Q5: How are you coping with your chronic illness/ what has helped you cope in the past? #LupusChat https://t.co/EdhMEHxfWi |
| Tiffany ⁷ @TiffanyAndLupus Q5: How are you coping with your chronic illness/ what has helped you cope in the past? #LupusChat https://t.co/87dBiihGa7 |
| Caring For Lupus @CaringForLupus A3. Hoy en día, espero que el Reumatólogo y otros especialista de mi hija, escuchen y tomen en consideración sus síntomas. Tomo fotografías y videos y se las enseñó durante las citas para que puedan ver y entender por lo que ella pasa. #LupusChat |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q4: Q4: ¿Bajo qué circunstancias usted debe llamar a su médico inmediatamente y / o ir a la sala de emergencias? #LupusChat https://t.co/jmIMXNBp78 |
| #LupusChat @Lupus_Chat A1 #LupusChat 👇 https://t.co/XBYIQ7OVPi |
| Caring For Lupus @CaringForLupus RT @Lupus_Chat: Q4: Q4: Under what circumstances should you alert your doctor immediately and/or go to the Emergency Room? #LupusChat https://t.co/9HwiKJr7dk |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @Lupus_Chat A4. Chest pain. Shortness of breath. Lightheadedness. #LupusChat |
| Caring For Lupus @CaringForLupus A4: When I see new symptoms, or a symptom is getting worst, I call her Rheumatologist. I guess it gives me a peace of mind that i’m communicating the new information to her doctor. #LupusChat |
| Caring For Lupus @CaringForLupus A4: Cuando veo nuevos síntomas o un síntoma empeora, llamo a la Reumatóloga. Supongo que me da la tranquilidad de que estoy comunicando la nueva información a su médico. #LupusChat |
| #LupusChat @Lupus_Chat @jenny_vargas90 Hi Jenni! Thanks for sharing with us today. Remember to use #LupusChat in each tweet so the community can see what you share. 💜 https://t.co/XeR2q4wpTu |
| Caring For Lupus @CaringForLupus RT @fjrascon: A3: |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @sickysummie: A3: A3: I need a rheumy who 1) believes me, 2) knows how to treat me. Difficult to find with atypical seroneg disease! #lupuschat |
| Tiffany ⁷ @TiffanyAndLupus A4: It's always best to contact your doctor via phone/email to ask if it's an emergency 1st. But if you are having chest pain & trouble breathing GO TO THE ER! #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Communication with our physicians is crucial. We’ll discuss communicating our https://t.co/n4kkqeo8ZZ Question 4. #LupusChat https://t.co/8gwMooPQp4 |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @SynceNerd_Carli: A3: A3: I expect my doctors to be understanding, empathetic, and have a sense of urgency about not only treating my illness but also improving my quality of life. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @fjrascon: |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @LAlupusLady: A3 i expect the Dr. (whether a Rheumie, Dermie, Gastro or Internist) to provide treatment and care to me as a patient and communicate the healthcare plan with me. #LupusChat https://t.co/xduoRO2VHK |
| #LupusChat @Lupus_Chat A1 continued #LupusChat 👇 https://t.co/H4ksqD4eiE |
| Caring For Lupus @CaringForLupus RT @fjrascon: A4: |
| #LupusChat @Lupus_Chat RT @JDestiny58: |
| Tiffany ⁷ @TiffanyAndLupus #LupusChat A4 https://t.co/9dO7PnsO6B |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A4: A4: It's always best to contact your doctor via phone/email to ask if it's an emergency 1st. But if you are having chest pain & trouble breathing GO TO THE ER! #LupusChat |
| Caring For Lupus @CaringForLupus RT @fjrascon: |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A4: A4: When I see new symptoms, or a symptom is getting worst, I call her Rheumatologist. I guess it gives me a peace of mind that i’m communicating the new information to her doctor. #LupusChat |
| #LupusChat @Lupus_Chat RT @iveyjanette_207: @Lupus_Chat A4. Chest pain. Shortness of breath. Lightheadedness. #LupusChat |
| Caring For Lupus @CaringForLupus RT @fjrascon: |
| Caring For Lupus @CaringForLupus RT @fjrascon: A1: |
| Tiffany ⁷ @TiffanyAndLupus RT @CaringForLupus: A4: A4: When I see new symptoms, or a symptom is getting worst, I call her Rheumatologist. I guess it gives me a peace of mind that i’m communicating the new information to her doctor. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @iveyjanette_207: @Lupus_Chat A4. Chest pain. Shortness of breath. Lightheadedness. #LupusChat |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Q5: Q5: How are you coping with your chronic illness/ what has helped you cope in the past? #LupusChat https://t.co/EdhMEHxfWi |
| Amanda G @LAlupusLady A5 Coping with chronic illness, is about balance, acceptance and finding joy when you can. Helpful tools for me: music, acupuncture, dance and using VR for pain relief. #LupusChat https://t.co/uIS4v6ws5g |
| #LupusChat @Lupus_Chat Excelentes respuestas! Ahora profundicemos más. ¡Ahora estamos discutiendo cómo manejamos nuestras emociones en torno a la enfermedad crónica! #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @TiffanyAndLupus: #LupusChat A4 https://t.co/9dO7PnsO6B |
| #LupusChat @Lupus_Chat Q5: Cómo estás manejando tu enfermedad crónica / qué te ha ayudado a sobrellevarlo? #Lupuschat https://t.co/rFAEToMvly |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A1 #LupusChat, Cada caso es diferente. Algunos síntomas de Lupus son https://t.co/QFTpJeHg5R |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A4: A4: Cuando veo nuevos síntomas o un síntoma empeora, llamo a la Reumatóloga. Supongo que me da la tranquilidad de que estoy comunicando la nueva información a su médico. #LupusChat |
| Carly by Nature @SynceNerd_Carli @cassterlyrock Yes! The anxiety it induces is so real! It's hard to tell when to go in. I find that checking in with my doctor first and explaining my symptoms and their severity is helpful. Then they can put me at ease if need be. #LupusChat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A3. Hoy en día, espero que el Reumatólogo y otros especialista de mi hija, escuchen y tomen en consideración sus síntomas. Tomo fotografías y videos y se las enseñó durante las citas para que puedan ver y entender por lo que ella pasa. #LupusChat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A3. Nowadays I expect my daughter’s Rheumatologist and other specialist to acknowledge my daughter’s symptoms. I take pictures, videos to the appointments so they can see and understand what she goes through #LupusChat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A3. En la primera cita esperé que el reumatólogo explicara qué es el lupus, los síntomas, para proporcionar algún tipo de orientación. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Q5: Q5: Cómo estás manejando tu enfermedad crónica / qué te ha ayudado a sobrellevarlo? #Lupuschat https://t.co/rFAEToMvly |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A3. On the first appointment I expected the Rheumatologist to explain what is Lupus, the symptoms, to provide some kind of guidance. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A5: There are good days and there are bad days. Some days are easier than others. For me, I try to focus on making myself comfortable through any pain I experience. It helps me persist #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Q5: Q5: How are you coping with your chronic illness/ what has helped you cope in the past? #LupusChat https://t.co/EdhMEHxfWi |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A2. Well we did brochures, and printouts. The appointment was relatively quick. Because we didn't know anything about Lupus we didn't exactly know what to ask or what to expect. #LupusChat |
| Carly by Nature @SynceNerd_Carli A5: It is very difficult. There are many highs and lows. Sometimes it is easier to cope with than other times. #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A5: A5: There are good days and there are bad days. Some days are easier than others. For me, I try to focus on making myself comfortable through any pain I experience. It helps me persist #LupusChat |
| Carly by Nature @SynceNerd_Carli A5: es muy difícil. Hay muchos altibajos. A veces es más fácil de manejar que otras veces. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A5: A5: It is very difficult. There are many highs and lows. Sometimes it is easier to cope with than other times. #LupusChat |
| Carly by Nature @SynceNerd_Carli A5: Lupus is a lot to deal with. It becomes overwhelming quickly. I’ve learned that this is a forever journey. Progress is made everyday that I wake up and try. #LupusChat |
| Nae :) @heynaehey_ @Lupus_Chat A5: A strong support system, not giving up on ALL things I love, Writing myself positive affirmations everyday and focusing on natural healing alternatives. #LupusChat |
 | Kylie @LexicalGap Does anyone have LUPUS/CHRONIC PAIN SPECIFIC weight loss or exercise tips? #lupuschat #lupus #spoonie #lupuswarrior |
| Carly by Nature @SynceNerd_Carli A5: Lupus es mucho con lo que lidiar. Se vuelve abrumador rápidamente. Aprendí que este es un viaje para siempre. El progreso se hace todos los días que me despierto y trato. #LupusChat |
| Carly by Nature @SynceNerd_Carli A5: Journaling has been helpful. I’m a very private person so sharing thoughts with myself in this way was the first step to helping release emotions about Lupus. #LupusChat |
| Carly by Nature @SynceNerd_Carli A5: el diario ha sido útil. Soy una persona muy privada, así que compartir pensamientos conmigo de esta manera fue el primer paso para ayudar a liberar emociones sobre el Lupus. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Q5: Q5: How are you coping with your chronic illness/ what has helped you cope in the past? #LupusChat https://t.co/EdhMEHxfWi |
| Carly by Nature @SynceNerd_Carli A5: I talk to my partner, not as often as I should, but our conversations are reassuring and that is very helpful. #LupusChat |
| Amy Burns @AmyBurnsBooks @Lupus_Chat A5: I see a therapist to process the emotional challenges w/ having a chronic illness, & do as much comic art as I can for expression. Since starting plaquenil I'm able to do yoga more often which helps enormously w/ stress & pain management. In general I aim for fun. #LupusChat |
| #LupusChat @Lupus_Chat Our last question is next! #LupusChat https://t.co/xOvWWDt9Yp |
| Carly by Nature @SynceNerd_Carli A5: hablo con mi compañero, no con la frecuencia que debería, pero nuestras conversaciones son tranquilizadoras y eso es muy útil. #LupusChat |
| RaquelRoschell @raquelonpurpose RT @TiffanyAndLupus: A5: A5: There are good days and there are bad days. Some days are easier than others. For me, I try to focus on making myself comfortable through any pain I experience. It helps me persist #LupusChat |
| Carly by Nature @SynceNerd_Carli A5: I am blessed to have a good tribe around me. My support system is strong. My family and friends help me cope. #LupusChat |
| Nae :) @heynaehey_ @SynceNerd_Carli I love that word "progress" sis. That's the best way to explain this journey that we all are on. Every day is a challenge but we've all got to keep pushing forward. #LupusChat |
| Carly by Nature @SynceNerd_Carli A5: Tengo la bendición de tener una buena tribu a mi alrededor. Mi sistema de apoyo es fuerte. Mi familia y amigos me ayudan a hacer frente. #LupusChat |
| Meg Nunez @Megisflying @Lupus_Chat A4 I go if it’s a new symptom, such as when I started having chest pain. Since I think I’ve seen every specialist now, lol, idk when to go but I suppose when the pain is very severe or the symptoms are severe, like dizziness, fever, not able to eat #lupuschat |
| Carly by Nature @SynceNerd_Carli RT @JDestiny58: |
| #LupusChat @Lupus_Chat Lidiar con la enfermedad crónica puede ser un desafío y un cambio de vida. Lo discutiremos más en la Pregunta 6. #LupusChat |
| You cant fight the good fight if you're dead @sickysummie A5: I've had many cycles of grieving, each time landing at acceptance. I seize the joy in life, love big, and am intentionally happy. #lupuschat |
| Carly by Nature @SynceNerd_Carli RT @missnaedotcom: @SynceNerd_Carli I love that word "progress" sis. That's the best way to explain this journey that we all are on. Every day is a challenge but we've all got to keep pushing forward. #LupusChat |
| RaquelRoschell @raquelonpurpose RT @Lupus_Chat: Q5: Q5: How are you coping with your chronic illness/ what has helped you cope in the past? #LupusChat https://t.co/EdhMEHxfWi |
| #LupusChat @Lupus_Chat Q6: What tips, tricks, or life hacks would you offer to someone newly diagnosed with a chronic illness? #LupusChat https://t.co/JaWmXdTmdy |
| Tiffany ⁷ @TiffanyAndLupus Q6: What tips, tricks, or life hacks would you offer to someone newly diagnosed with a chronic illness? #LupusChat https://t.co/ggFnKzNfQq |
| Carly by Nature @SynceNerd_Carli RT @JDestiny58: |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @Lupus_Chat A5. I try to stay positive. Focus on what I CAN do. I listen to my body. Slow down and rest when I need to. My faith keeps me grounded. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @CaringForLupus: A4: A4: When I see new symptoms, or a symptom is getting worst, I call her Rheumatologist. I guess it gives me a peace of mind that i’m communicating the new information to her doctor. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @fjrascon: |
| #LupusChat @Lupus_Chat RT @fjrascon: |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Great answers! Now let’s dig deeper. We’re discussing how we manage our emotions surrounding Chronic Illness, next! #LupusChat https://t.co/kbbedUBRmr |
| #LupusChat @Lupus_Chat RT @sickysummie: A5: A5: I've had many cycles of grieving, each time landing at acceptance. I seize the joy in life, love big, and am intentionally happy. #lupuschat |
| #LupusChat @Lupus_Chat Q6: Qué consejos le ofrecerías a alguien recién diagnosticado con una enfermedad crónica? #LupusChat https://t.co/VJbF4VbYsh |
| #LupusChat @Lupus_Chat RT @Megisflying: @Lupus_Chat A4 I go if it’s a new symptom, such as when I started having chest pain. Since I think I’ve seen every specialist now, lol, idk when to go but I suppose when the pain is very severe or the symptoms are severe, like dizziness, fever, not able to eat #lupuschat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A5: A5: Tengo la bendición de tener una buena tribu a mi alrededor. Mi sistema de apoyo es fuerte. Mi familia y amigos me ayudan a hacer frente. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A5: A5: I am blessed to have a good tribe around me. My support system is strong. My family and friends help me cope. #LupusChat |
| #LupusChat @Lupus_Chat RT @AmyLBurns: @Lupus_Chat A5: @Lupus_Chat A5: I see a therapist to process the emotional challenges w/ having a chronic illness, & do as much comic art as I can for expression. Since starting plaquenil I'm able to do yoga more often which helps enormously w/ stress & pain management. In general I aim for fun. #LupusChat |
| #LupusChat @Lupus_Chat RT @JDestiny58: |
| #LupusChat @Lupus_Chat RT @missnaedotcom: @Lupus_Chat A5: @Lupus_Chat A5: A strong support system, not giving up on ALL things I love, Writing myself positive affirmations everyday and focusing on natural healing alternatives. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A5: A5: Lupus is a lot to deal with. It becomes overwhelming quickly. I’ve learned that this is a forever journey. Progress is made everyday that I wake up and try. #LupusChat |
| #LupusChat @Lupus_Chat RT @Lupus_Chat: Q6: Q6: What tips, tricks, or life hacks would you offer to someone newly diagnosed with a chronic illness? #LupusChat https://t.co/JaWmXdTmdy |
| You cant fight the good fight if you're dead @sickysummie @AmyLBurns @Lupus_Chat Yes fun! #LupusChat |
| Caring For Lupus @CaringForLupus A6. We have made different types of adjustments since my daughter’s diagnosis. We want her to have as a normal life as possible but we are also very conscious that some changes are a must #LupusChat |
| #LupusChat @Lupus_Chat Si eres nuevo en @Lupus_Chat quieres saber cómo participar, sólo tienes que hacer clic en la etiqueta ~ > #LupusChat a unirse a nosotros! https://t.co/xMFEPo2Kdh |
| Caring For Lupus @CaringForLupus A6. Hemos realizado diferentes tipos de ajustes desde el diagnóstico de mi hija. Queremos que tenga una vida lo mas normal que sea posible, pero también somos muy conscientes de que algunos cambios son obligatorios #LupusChat |
| RaquelRoschell @raquelonpurpose @Lupus_Chat A5 : What's that famous book open with by Dickens - "It was the best of times..it was the worst of times." There are great days and really bad days. Getting a handle on it all. Taking good care of me💕. #LupusChat |
| #LupusChat @Lupus_Chat RT @mommade4change: @Lupus_Chat A5 : @Lupus_Chat A5 : What's that famous book open with by Dickens - "It was the best of times..it was the worst of times." There are great days and really bad days. Getting a handle on it all. Taking good care of me💕. #LupusChat |
| RaquelRoschell @raquelonpurpose RT @fjrascon: A3: |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A6. Hemos realizado diferentes tipos de ajustes desde el diagnóstico de mi hija. Queremos que tenga una vida lo mas normal que sea posible, pero también somos muy conscientes de que algunos cambios son obligatorios #LupusChat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A6. We have made different types of adjustments since my daughter’s diagnosis. We want her to have as a normal life as possible but we are also very conscious that some changes are a must #LupusChat |
| You cant fight the good fight if you're dead @sickysummie A6: Learn to reinforce your boundaries. No can be a complete sentence. #lupuschat |
| Carly by Nature @SynceNerd_Carli @fjrascon Yes! Being prepared for the lows is important. We don't know when, but they will come. We must brace ourselves & collaborate w/physicians to help make it though. This point ties in heavily with our last #LupusChat discussion about Chronic Illness Burnout. |
| Carly by Nature @SynceNerd_Carli RT @sickysummie: A5: A5: I've had many cycles of grieving, each time landing at acceptance. I seize the joy in life, love big, and am intentionally happy. #lupuschat |
| Dr. Ellen Andersen @politicablue A5. Coping for me is a day to day thing. My lupus has actually been taking it easy on me lately, but other stuff has stepped in to take its place. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A3: I also expect my physicians to inquire about my mental health, and my stress levels, as well as future goals. This helps create a more accurate treatment plan for me. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @Lupus_Chat: Q6: Q6: What tips, tricks, or life hacks would you offer to someone newly diagnosed with a chronic illness? #LupusChat https://t.co/JaWmXdTmdy |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: @fjrascon Yes! Being prepared for the lows is important. We don't know when, but they will come. We must brace ourselves & collaborate w/physicians to help make it though. This point ties in heavily with our last #LupusChat discussion about Chronic Illness Burnout. |
| Amanda G @LAlupusLady A6 lifting from FRIENDS "welcome to #Lupus, it sucks. You're going to love it." Life with chronic illness is not easy but you can still experience joy and find your smile. #LupusChat https://t.co/uiKbOhzFvC |
| #LupusChat @Lupus_Chat RT @sickysummie: A6: A6: Learn to reinforce your boundaries. No can be a complete sentence. #lupuschat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Our last question is next! #LupusChat https://t.co/xOvWWDt9Yp |
| #LupusChat @Lupus_Chat RT @politicablue: A5. Coping for me is a day to day thing. My lupus has actually been taking it easy on me lately, but other stuff has stepped in to take its place. #LupusChat |
| RaquelRoschell @raquelonpurpose Have to go #LupusChat family. I have a meeting that starts now. Have a wonderful #SelfCareSunday! |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A3: A3: I also expect my physicians to inquire about my mental health, and my stress levels, as well as future goals. This helps create a more accurate treatment plan for me. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @politicablue: A5. Coping for me is a day to day thing. My lupus has actually been taking it easy on me lately, but other stuff has stepped in to take its place. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @sickysummie: A6: A6: Learn to reinforce your boundaries. No can be a complete sentence. #lupuschat |
| Carly by Nature @SynceNerd_Carli RT @mommade4change: @Lupus_Chat A5 : @Lupus_Chat A5 : What's that famous book open with by Dickens - "It was the best of times..it was the worst of times." There are great days and really bad days. Getting a handle on it all. Taking good care of me💕. #LupusChat |
| itsmorenamorena @itsmorenamorena A4: I haven't had a flare since that was a severe as I felt prior to diagnosis, but if I ever felt like that again, I'd surely alert my doctor. #LupusChat https://t.co/PdUc3AhfYq |
| Carly by Nature @SynceNerd_Carli A6: I recommend reading about new research that is out there. It helps you keep hope and remain aware. #LupusChat |
| Monique @Uniquely_Poised Q5: The only issue's Im dealing with now is my RA waking up with joint pain isn't fun. My doctor decided to put me back on Plaquenil after years of being off. I do believe in natural healing so I don't take them😱. I perfer meditation as well works for me #Lupuschat |
| Carly by Nature @SynceNerd_Carli A6: Recomiendo leer sobre nuevas investigaciones que están por ahí. Te ayuda a mantener la esperanza y mantenerte alerta. #LupusChat |
| Monique @Uniquely_Poised RT @sickysummie: A5: A5: I've had many cycles of grieving, each time landing at acceptance. I seize the joy in life, love big, and am intentionally happy. #lupuschat |
| Tiffany ⁷ @TiffanyAndLupus @fjrascon For me, "I don't Know" should always be followed with "But let's find out." Just because an answer is unknown doesn't mean we can't find a solution! #LupusChat |
| Carly by Nature @SynceNerd_Carli A6: Communicate with your doctor. Don’t feel bad if you feel that your doctor isn’t being what you need. It is a collaboration. If it isn’t beneficial to you, you can let them go and find another. #LupusChat |
| #LupusChat @Lupus_Chat RT @Uniquely_Poised: Q5: Q5: The only issue's Im dealing with now is my RA waking up with joint pain isn't fun. My doctor decided to put me back on Plaquenil after years of being off. I do believe in natural healing so I don't take them😱. I perfer meditation as well works for me #Lupuschat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A6: A6: I recommend reading about new research that is out there. It helps you keep hope and remain aware. #LupusChat |
| #LupusChat @Lupus_Chat RT @itsmorenamorena: A4: A4: I haven't had a flare since that was a severe as I felt prior to diagnosis, but if I ever felt like that again, I'd surely alert my doctor. #LupusChat https://t.co/PdUc3AhfYq |
| You cant fight the good fight if you're dead @sickysummie A6: Find a peer community. Online or local support is important to self-educate, accept and normalize chronic illness experiences #lupuschat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Lupus_Chat: Q6: Q6: What tips, tricks, or life hacks would you offer to someone newly diagnosed with a chronic illness? #LupusChat https://t.co/JaWmXdTmdy |
| Nae :) @heynaehey_ @Lupus_Chat A6: Tip- "Ignore people who think they know how to heal you. It's unnecessary stress." Trick- "Buy a journal & document everything so you can better voice your symptoms and opinions at doctors appointments." Life hack - "Join #LupusChat & connect with people you can vent to." 😍 |
| Caring For Lupus @CaringForLupus A7 Every sunscreen is not the same, it is important to check with your doctor that you are using the correct one. #LupusChat https://t.co/rHH2ZRyYRK https://t.co/PxWZ2Fn4nc |
| Carly by Nature @SynceNerd_Carli A6: comuníquese con su médico. No se sienta mal si siente que su médico no es lo que necesita. Es una colaboración. Si no es beneficioso para usted, puede dejarlos ir y buscar otro. #LupusChat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: @fjrascon For me, "I don't Know" should always be followed with "But let's find out." Just because an answer is unknown doesn't mean we can't find a solution! #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A6: A6: Communicate with your doctor. Don’t feel bad if you feel that your doctor isn’t being what you need. It is a collaboration. If it isn’t beneficial to you, you can let them go and find another. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @SynceNerd_Carli: A6: A6: I recommend reading about new research that is out there. It helps you keep hope and remain aware. #LupusChat |
| Carly by Nature @SynceNerd_Carli A6: ASK QUESTIONS! It is important to speak up on what you need but to also learn all about your illness. Own the power of having the knowledge. #LupusChat |
| Dr. Ellen Andersen @politicablue A5. First thing I learned to do with lupus is to shepherd my energy and use it for stuff I want to do. Offload chores whenever possible. I’m lucky I can $$ for housecleaning. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @itsmorenamorena: A4: A4: I haven't had a flare since that was a severe as I felt prior to diagnosis, but if I ever felt like that again, I'd surely alert my doctor. #LupusChat https://t.co/PdUc3AhfYq |
| Tiffany ⁷ @TiffanyAndLupus RT @sickysummie: A6: A6: Learn to reinforce your boundaries. No can be a complete sentence. #lupuschat |
| Carly by Nature @SynceNerd_Carli A6: ¡HAGA PREGUNTAS! Es importante hablar sobre lo que necesita, pero también aprender todo sobre su enfermedad. Poseer el poder de tener el conocimiento. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @politicablue: A5. Coping for me is a day to day thing. My lupus has actually been taking it easy on me lately, but other stuff has stepped in to take its place. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus RT @SynceNerd_Carli: @fjrascon Yes! Being prepared for the lows is important. We don't know when, but they will come. We must brace ourselves & collaborate w/physicians to help make it though. This point ties in heavily with our last #LupusChat discussion about Chronic Illness Burnout. |
| Carly by Nature @SynceNerd_Carli A6: Always have a “go bag” ready when you go to appointments. Appointments turn into hospital admissions quickly. So, prepare for that. Bring phone chargers, snacks, tablet, headphones, etc. #LupusChat |
| #LupusChat @Lupus_Chat RT @politicablue: A5. First thing I learned to do with lupus is to shepherd my energy and use it for stuff I want to do. Offload chores whenever possible. I’m lucky I can $$ for housecleaning. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A6: A6: ASK QUESTIONS! It is important to speak up on what you need but to also learn all about your illness. Own the power of having the knowledge. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A6: A6: ¡HAGA PREGUNTAS! Es importante hablar sobre lo que necesita, pero también aprender todo sobre su enfermedad. Poseer el poder de tener el conocimiento. #LupusChat |
| #LupusChat @Lupus_Chat RT @fjrascon: |
| #LupusChat @Lupus_Chat RT @missnaedotcom: @Lupus_Chat A6: @Lupus_Chat A6: Tip- "Ignore people who think they know how to heal you. It's unnecessary stress." Trick- "Buy a journal & document everything so you can better voice your symptoms and opinions at doctors appointments." Life hack - "Join #LupusChat & connect with people you can vent to." 😍 |
| #LupusChat @Lupus_Chat RT @sickysummie: A6: A6: Find a peer community. Online or local support is important to self-educate, accept and normalize chronic illness experiences #lupuschat |
| Carly by Nature @SynceNerd_Carli A6: siempre tenga listo un "bolso de ir" cuando vaya a las citas. Las citas se convierten en ingresos hospitalarios rápidamente. Entonces, prepárate para eso. Trae cargadores de teléfono, bocadillos, tableta, auriculares, etc. #LupusChat |
| Meg Nunez @Megisflying @Lupus_Chat A5 rest when I need to. because of lupus, I found I love running. I’ve become passionate about that and my healthy eating. I swim too. I focus on the moment. I can’t always run but I love it when I can.#lupuschat |
| Caring For Lupus @CaringForLupus A7. Listen to you body. Sometimes the weather can also play a factor with your symptoms. #LupusChat |
| Carly by Nature @SynceNerd_Carli A6: Always reach out if you need help! #LupusChat is here when you need us. And we mean that!! |
| Caring For Lupus @CaringForLupus A6. Listen to you body. Sometimes the weather can also play a factor with your symptoms. #LupusChat |
| #LupusChat @Lupus_Chat RT @SynceNerd_Carli: A6: A6: Always have a “go bag” ready when you go to appointments. Appointments turn into hospital admissions quickly. So, prepare for that. Bring phone chargers, snacks, tablet, headphones, etc. #LupusChat |
| #LupusChat @Lupus_Chat RT @Megisflying: @Lupus_Chat A5 rest when I need to. because of lupus, I found I love running. I’ve become passionate about that and my healthy eating. I swim too. I focus on the moment. I can’t always run but I love it when I can.#lupuschat |
| Carly by Nature @SynceNerd_Carli A6: ¡Siempre busca ayuda si necesitas ayuda! #LupusChat está aquí cuando nos necesites. ¡Y lo decimos en serio! |
| Carly by Nature @SynceNerd_Carli RT @Megisflying: @Lupus_Chat A5 rest when I need to. because of lupus, I found I love running. I’ve become passionate about that and my healthy eating. I swim too. I focus on the moment. I can’t always run but I love it when I can.#lupuschat |
| Carly by Nature @SynceNerd_Carli RT @politicablue: A5. First thing I learned to do with lupus is to shepherd my energy and use it for stuff I want to do. Offload chores whenever possible. I’m lucky I can $$ for housecleaning. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 @Lupus_Chat A6. Slow down. Surround yourself with people who will support you,not denigrate you. Learn everything you can. Books. Websites. Support groups. #LupusChat. Stay positive! |
| Carly by Nature @SynceNerd_Carli RT @fjrascon: |
| Meg Nunez @Megisflying @Lupus_Chat A5 I try to find the joy in everything. Even the little things. Because lupus steals so much, it’s important to be able to shift your focus and your dreams. We are valuable. #lupuschat |
| Carly by Nature @SynceNerd_Carli RT @missnaedotcom: @Lupus_Chat A6: @Lupus_Chat A6: Tip- "Ignore people who think they know how to heal you. It's unnecessary stress." Trick- "Buy a journal & document everything so you can better voice your symptoms and opinions at doctors appointments." Life hack - "Join #LupusChat & connect with people you can vent to." 😍 |
| #LupusChat @Lupus_Chat RT @iveyjanette_207: @Lupus_Chat A6. Slow down. Surround yourself with people who will support you,not denigrate you. Learn everything you can. Books. Websites. Support groups. #LupusChat. Stay positive! |
| You cant fight the good fight if you're dead @sickysummie A6: Seek balance. Prioritize enjoyment so life isn't only disease and must-dos. #lupuschat |
| Nikki †♡☾• ˚ @Nicolette_BABEY No fast food, no red meat, no beef, green tea, rest as much as possible & I now have a list of skin products recommended to me. #LupusChat https://t.co/roYnf1Uma5 |
| #LupusChat @Lupus_Chat RT @Megisflying: @Lupus_Chat A5 I try to find the joy in everything. Even the little things. Because lupus steals so much, it’s important to be able to shift your focus and your dreams. We are valuable. #lupuschat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A6. Listen to you body. Sometimes the weather can also play a factor with your symptoms. #LupusChat |
| Caring For Lupus @CaringForLupus A6 An eye exam is recommended before start taking plaquenil #LupusChat https://t.co/w2E6wjjoA3 https://t.co/IciL3GRzYx |
| Nae :) @heynaehey_ @TiffanyAndLupus Your rheumatologist needs her butt whooped not telling you about local orgs. #LupusChat https://t.co/aGLfzq3DEy |
| Dr. Ellen Andersen @politicablue A6. Prioritize things that matter to you. Don’t spend energy on unimportant things. Live with imperfection. Be kind to yourself. #LupusChat |
| Tiffany ⁷ @TiffanyAndLupus A6: STRESS has a huge affect on the disease level activity in our bodies. Make boundaries whenever necessary. Put your health 1st, b/c nobody else will like you. #LupusChat |
| Caring For Lupus @CaringForLupus A7. Cada protector solar no es lo mismo, es importante verificar con su médico que está usando el correcto. #LupusChat |
| Monique @Uniquely_Poised Q6: Don't panic I lnow that's hard not to do. A friend of mines brother was just diagnosed and it's hitting him hard. I told her he needs support I believe that's the biggest thing with this disease. Finding the right doctor's. #Lupuschat |
| #LupusChat @Lupus_Chat RT @TiffanyAndLupus: A6: A6: STRESS has a huge affect on the disease level activity in our bodies. Make boundaries whenever necessary. Put your health 1st, b/c nobody else will like you. #LupusChat |
| #LupusChat @Lupus_Chat RT @politicablue: A6. Prioritize things that matter to you. Don’t spend energy on unimportant things. Live with imperfection. Be kind to yourself. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @SynceNerd_Carli: @fjrascon Yes! Being prepared for the lows is important. We don't know when, but they will come. We must brace ourselves & collaborate w/physicians to help make it though. This point ties in heavily with our last #LupusChat discussion about Chronic Illness Burnout. |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A6 An eye exam is recommended before start taking plaquenil #LupusChat https://t.co/w2E6wjjoA3 https://t.co/IciL3GRzYx |
| #LupusChat @Lupus_Chat RT @sickysummie: A6: A6: Seek balance. Prioritize enjoyment so life isn't only disease and must-dos. #lupuschat |
| Caring For Lupus @CaringForLupus A6. Cada protector solar no es lo mismo, es importante verificar con su médico que está usando el correcto. #LupusChat |
| Monique @Uniquely_Poised RT @CaringForLupus: A6. Listen to you body. Sometimes the weather can also play a factor with your symptoms. #LupusChat |
| #LupusChat @Lupus_Chat RT @Uniquely_Poised: Q6: Q6: Don't panic I lnow that's hard not to do. A friend of mines brother was just diagnosed and it's hitting him hard. I told her he needs support I believe that's the biggest thing with this disease. Finding the right doctor's. #Lupuschat |
| You cant fight the good fight if you're dead @sickysummie A6: Bribe yourself: a treat after medical appts, injections, etc, really works. #lupuschat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @TiffanyAndLupus: A6: A6: STRESS has a huge affect on the disease level activity in our bodies. Make boundaries whenever necessary. Put your health 1st, b/c nobody else will like you. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @Megisflying: @Lupus_Chat A5 I try to find the joy in everything. Even the little things. Because lupus steals so much, it’s important to be able to shift your focus and your dreams. We are valuable. #lupuschat |
| Caring For Lupus @CaringForLupus A6. Escucha a tu cuerpo. A veces, el clima también puede jugar un factor con sus síntomas. #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @SynceNerd_Carli: A6: A6: I recommend reading about new research that is out there. It helps you keep hope and remain aware. #LupusChat |
| Caring For Lupus @CaringForLupus RT @SynceNerd_Carli: A6: A6: ¡Siempre busca ayuda si necesitas ayuda! #LupusChat está aquí cuando nos necesites. ¡Y lo decimos en serio! |
| Caring For Lupus @CaringForLupus RT @SynceNerd_Carli: A6: A6: Always reach out if you need help! #LupusChat is here when you need us. And we mean that!! |
| Amy Burns @AmyBurnsBooks @Lupus_Chat A6 Be open to trying new things but don't feel like you have to change everything all at once. Figuring out what's right for you may take years & may change w/ time. Try: psychotherapy physical therapy yoga eating less processed foods & more fresh foods medication art #LupusChat |
| Ivey McClelland(she/her)❤❤❤❤ @iveyjanette_207 RT @fjrascon: |
| Caring For Lupus @CaringForLupus RT @SynceNerd_Carli: A6: A6: Always have a “go bag” ready when you go to appointments. Appointments turn into hospital admissions quickly. So, prepare for that. Bring phone chargers, snacks, tablet, headphones, etc. #LupusChat |
 | CettaKennedy @CettaKennedy RT @Lupus_Chat: Q5: Q5: How are you coping with your chronic illness/ what has helped you cope in the past? #LupusChat https://t.co/EdhMEHxfWi |
| Carly by Nature @SynceNerd_Carli @Uniquely_Poised I know how it is to be off a medication & a doctor recommends it again based on symptoms/labs. Be sure to let your Dr. know you're not taking them. So they're not basing expectations and goals based on that Med being in your system. #LupusChat |
| Caring For Lupus @CaringForLupus RT @SynceNerd_Carli: A6: A6: ¡HAGA PREGUNTAS! Es importante hablar sobre lo que necesita, pero también aprender todo sobre su enfermedad. Poseer el poder de tener el conocimiento. #LupusChat |
| Carly by Nature @SynceNerd_Carli RT @itsmorenamorena: A4: A4: I haven't had a flare since that was a severe as I felt prior to diagnosis, but if I ever felt like that again, I'd surely alert my doctor. #LupusChat https://t.co/PdUc3AhfYq |
| Caring For Lupus @CaringForLupus RT @fjrascon: |
| Monique @Uniquely_Poised ? #Lupuschat |
| Carly by Nature @SynceNerd_Carli RT @AmyLBurns: @Lupus_Chat A6 Be open to trying new things but don't feel like you have to change everything all at once. Figuring out what's right for you may take years & may change w/ time. Try: psychotherapy physical therapy yoga eating less processed foods & more fresh foods medication art #LupusChat |
| #LupusChat @Lupus_Chat That brings our #LupusChat today to a close! Thanks to each of you for tuning in today to share with us & the community. 💜✨ https://t.co/kxTVoiO5ho |
| itsmorenamorena @itsmorenamorena @TiffanyAndLupus A5: Lately, it's been coloring. But spa days, acupuncture, music, reading all relax me and help me cope with physical or emotional manifestations of lupus #LupusChat https://t.co/Y2McmQBD1S |
| Meg Nunez @Megisflying @Lupus_Chat A6 eat healthy, drink water, take a walk every day that you’re able, find something you can be passionate about (write, draw, sing, read, animals, people, support groups...) #lupuschat |
| Carly by Nature @SynceNerd_Carli @Megisflying It's really the best way to approach this. #LupusChat |
| Monique @Uniquely_Poised RT @SynceNerd_Carli: A6: A6: Always reach out if you need help! #LupusChat is here when you need us. And we mean that!! |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A6. Escucha a tu cuerpo. A veces, el clima también puede jugar un factor con sus síntomas. #LupusChat |
| #LupusChat @Lupus_Chat RT @sickysummie: A6: Bribe yourself: A6: Bribe yourself: a treat after medical appts, injections, etc, really works. #lupuschat |
| #LupusChat @Lupus_Chat RT @CaringForLupus: A6. Cada protector solar no es lo mismo, es importante verificar con su médico que está usando el correcto. #LupusChat |
| You cant fight the good fight if you're dead @sickysummie A6: Cognitive and emotional changes are, unfortunately, normal. Counseling can help you strategize and cope. #lupuschat |
| Monique @Uniquely_Poised RT @Lupus_Chat: That brings our #LupusChat today to a close! Thanks to each of you for tuning in today to share with us & the community. 💜✨ https://t.co/kxTVoiO5ho |
| #LupusChat @Lupus_Chat Our next #LupusChat will be Sunday March 4th at 3PM ET so save the date! https://t.co/nMoahGiFQq |
#LupusChat content from Twitter.