I am newly diagnosed and very uneducated about this disease. I am also unfamiliar with this website, so I am not sure if anyone is actually reading this (lol). If anyone comes across me will you please tell me where to go to meet people or ask open questions?
Thanks in advance,
Hello Madcat1776, if you want to ask questions then open a discussion just like you have done with this one. If you want to chat you can see if anyone else is online by clicking on the Members Online box at the bottom right of your screen ... for open main room chat with one or more other members online then you can use the Main Room box, also below, but if you want a private conversation then you click on the members name and a private chat box will open.
The community is pretty quiet at the moment although we have lots of new members joining and lots of people are visiting and reading. The best way to stimulate responses to your own posts is to respond to others peoples and it's also nice when new members receive a welcome from other members when they join ... so feel free to dive in.
Look forward to seeing you online :-)
JulesG from ModSupport
Thank you, JulesG! I posted so many places I knew I would find a response somewhere! I am happy you found me and were able to answer my questions. :)
Hope you have a great day.
The great thing about our site is that you don't need to post in lots of places ... most folks when they sign-in browse the 'latest activity' feed on the main page which puts all new posts and new members in one place.
Dive in madcat, get to know some people by responding or welcoming them and you'll start making new friends. To read-up about other members click on their avatars to read their profile stories.
I, too, feel very uneducated. I was diagnosed last year and thought, "no way." Well, symptoms got worse... anyway, here I am owning up to going to try and take better care of myself.
I asked my pastor friend if she knew anything about Lupus, and she expained to me (not sure if it's true but it makes sense) that Lupus is basically when your body has no real internal temperature regulation. Because of that it reaks havoc everywhere. (Again, not sure, but it made sense.)
I know that doesn't help you as far as here to go here... but I wanted to let you know you aren't alone, and I saw your post. :) (I am new to this site, too.)
Hello Madcat1776, welcome I’m glad you are here! I got diagnosed with lupus six years ago. I’m still learning about lupus but it is an auto immune disease. Our bodies immune system that is supposed to help fight against foreign invaders that make us sick like viruses and bacteria ect… does the opposite at times. Our body actually attacks our own tissues causing damage and inflammation. It can happen in any organ the kidneys, lungs, heart… Lupus affects everyone differently but most of us have some similarities and can definitely relate to one another. I’m hear to chat! If there’s anything I can help you with or answer id be happy to take care!
I am glad that I found this website. I am glad that you are here. I am just familiarizing myself with this disease and like I was saying to another woman on here, I don't believe my family or friends realize just how sick I am. I also have RA and 3 other autoimmune diseases and I don't really know where to go for support. I am suffering from joint pain and extreme fatigue, sometimes I will sleep up to 21 hours a day! That hurts my marriage, as you can imagine, and I simply don't know what to do. If there are any links that I can read or you have any suggestions, please let me know.
Hello Helen and welcome.So nice to meet you and im glad you have joined us.I love your curly hair, i too have curly hair and glasses coincedentally.I have inflammatory arthritis (most likely lupus) and they suspect ankylosing spondylitis and i have fibro as well.I totally relate to the extreme fatigue,i get that too.The people here are friendly and kind so feel free to make a discussion, share your concerns,feel free to ask any questions and get familiar with this site.
We have a welcome page first time user guide and resources for you.If you need anything, please let us know.The community is rather quiet at the moment but feel free to jump in and make yourself at home.
Looking forwards to seeing you online :)
Mandy aka Queenpink