View Full Version : If your Lupi and you know it clap your hands "clap clap"
05-09-2012, 09:42 AM
I'm a 25 year old girly who has been "diagnosed" with Lupus (SLE) since last september so i'm a bit of a newbie. I'm sure like every one on here with Lupi (for some reason if i call it lupi its not as bad and makes it cute and cuddly) we all have our good and bad days... alot of the time the good days are incredibly good because they aren't as often. As i'm now a bit sick of reading various things on the internet from people who "don't seem to be real" and i know no one with Lupi in my area to talk to, I was wondering if anyone cared to have a natter. My Lupi affects my joints, my muscles etc kidneys and my brain which causes weird little moods which I call "kerry's dementia days" where i literally have no idea where I am or what i'm doing... amusing for anyone watching i'm sure. I just wondered if anyone out there gets similar symptoms with the brain. I'm a tough little cookie but sometimes its quite hard when you feel your going a bit mad.
I hope I get to natter to some fellow Lupi's soon!
Take care of yourselves xxx
05-09-2012, 01:02 PM
Welcome to WHL! I feel you on the moods.. A lot of us here call it 'brain fog'. I'm sure someone with more knowledge can comment on how Lupus and other AI diseases can affect the brain.
I am 20, and was dx'd in Feb with some sort of autoimmune complex. Right now they're leaning towards MCTD, with features of Lupus, Scleroderma and Dermamyositis. Once again, WELCOME!!!
05-09-2012, 01:28 PM
I am 25 as well and was recently diagnosed this past March. I feel both you and tripLexie on the brain fog. I've been diagnosed with ADD, but to be honest I think that it's all related to my memory due to Lupus.
I welcome you to a place where you can express yourself freely and most definitely share your feelings with people who will at all costs defend and support you.
I turned to this site after being diagnosed because I was afraid and lacked support from my partner. This forum has provided me with a lot of support to get through the first stage of acceptance.
05-09-2012, 01:37 PM
I like how you put that, M. I feel like being dx'd with a chronic disease gives way to a emotional roller coaster. Similar to the stages of grief.. Denial.. Anger.. Depression.. Acceptance.. I definelty went through that. I like to think that this forum also helped me getting to that acceptance stage.
Welcome to WHL. I was diagnosed with SLE in 2004. The problem you speak of, as others have mentioned, is indeed Cognitive Dysfunction, AKA Brainfog. It's one of the most common symptoms we get when having a Lupus Flare. It can be frustrating, embarassing, and sometimes heartbreaking. However, it can also be quite funny at times, which is the reason why I started a thread called "You Know You Have Brainfog When...". Here's a link-
Sometimes you've just gotta laugh at yourself.
I'm glad you decided to join our group. Please make yourself at home!
PS-What's a Natter?
05-09-2012, 04:20 PM
I'm 29 and have had lupus for 1 and 1/2 years. It's a great forum where you can ask questions to others would seem silly but here someone would have experience it or has some great tips to get through it.
I also like to natter (chat) too. Always a listening ear here
05-09-2012, 09:44 PM
i too would like to welcome you to our cyber family.
05-10-2012, 04:55 AM
Wow so many replies to wake up to. :).. be it a bit later in the morning than planned! I'd like to appologise for my british slang... a "natter" is to have a chat/talk. I completely agree Rob the "foggy" times can be very funny... most of the time it does make me giggle. The only real problem is when i'm at work.. I tend to get quite panicky when having a foggy moment infront of colleagues and customers. As... i'm pretty sure they think i'm a moron... Which makes the stress worse .. making the fog a bit of a pea souper (thick) ... and making me all panicky like a squirrel on crack. Any one feel the same?
How do Lupi's generally cope with work? is there any magical secrets i should know about before i get sacked?
Much love xx
05-12-2012, 09:21 AM
I just wanted to add my welcome to those you've already received. I hope your enjoyed the thread "You know you have brain fog when.." It is one of our most popular threads and continues to grow with hilarious anecdotes.
I wish there was a magic secret that we could be privy to in order to help us with our jobs. Since "Lupi" is different for each of us, so are the techniques we use to help us individualized for each of us :-(
I do hope that you are able to find a way that is helpful to you. Please know that we are here to help you as much as we can and in any way that we can! Again....welcome.
Peace and Blessings
05-12-2012, 08:54 PM
Welcome to WHL. Many of us have had to deal with brain fog at work. I was a high school teacher. I wrote very detailed lesson plans and kept my computer open to the day's plan. When my brain spaced out, I could walk behind my desk and re-read the plan. With today's hand-held electronic pads, perhaps you could carry your "daily plan" around with you.
I would sometimes forget basic vocabulary words that I had just taught my students. When I would hesitate, they thought that I was playing a game with them, and they would fill in the word. We played that game often - LOL.