Art chick - thanks for that info! I don't belong, just looked up how to find it. Sometimes we have to find out for ourselves, but its good to have reviews from others! There is an encouraging Fibro one on FB that sends uplifting and humorous quotes that I like. Also the 'butyoudontlooksick' one is okay - I like their 'spoon theory' - its an interesting way to explain our fatigue to others.
Once again, I am blessed to have found this site! When I read everyone's posts, so much of it is so very close and then there are the dear dear people that have Lupus and so many other issues that my heart goes out to them and I am so inspired by their strength! When I see things that I can so relate to, it helps me - so very much! I have been able to find hope and love from you all. I'm sure that it's this site that has helped me to understand things so much better! Wishing everyone a better 2013!
Hello Jan,
Thank you for such a sincere reply and it's statements like these which help new members such as prtyblueyz just being diagnosed.
Your such a wonderful friend and members :) xxx
Jan said:
Once again, I am blessed to have found this site! When I read everyone's posts, so much of it is so very close and then there are the dear dear people that have Lupus and so many other issues that my heart goes out to them and I am so inspired by their strength! When I see things that I can so relate to, it helps me - so very much! I have been able to find hope and love from you all. I'm sure that it's this site that has helped me to understand things so much better! Wishing everyone a better 2013!
Hay ! Hay! , take a moment and BREATHE!!!! it's okay to feel like that but don't let it overwhelm YOU !!! Stress is what causes a FLARE and (i think ) that's what you are going through at those moments of Pain!!!! It's okay to visit the site when you are up to it- just don't take it so personal. Sometimes the stories do / maybe not apply to you at the moment , but at the same time they are viewed as knowledge -maybe for the future !!! smile or maybe it will never happen at all to you but knowing that it COULD happen at anytime , "Living with LUPUS ". Learning about different things and situations is the key of how it starts the fight against LUPUS . Yes the shareing /telling is hard at times but hay!!!! again don't take it personal... Hope that this helps you - smile ... Beverly L.
I have had lupus for about 5 years and this year I was put in the hospital twice, it started with the pain I always have then I started having chest pain that lasted longer than before when I went to the DR. my BP was very high and my EKG was slightly abnormal. Watch your symptoms you know your body best and with lupus something little can turn into something serious, take care of yourself
Thanks godsgirl for your imput...this is what i mentioned earlier it's not often we're put in hospital unless something else shows it's ugly head and taking interest in your symptoms is highly important.
Love Terri xxx
godsgirl66 said:
I have had lupus for about 5 years and this year I was put in the hospital twice, it started with the pain I always have then I started having chest pain that lasted longer than before when I went to the DR. my BP was very high and my EKG was slightly abnormal. Watch your symptoms you know your body best and with lupus something little can turn into something serious, take care of yourself
That is so true !!! hang in there everything will get better for you .....Beverly L.
Beverly just love you full confidence all the time my friend :) xxx
Beverly L. said:
That is so true !!! hang in there everything will get better for you .....Beverly L.
Lupus is a very strange and diverse illness. There is no textbook version. I don’t think that there are two people on here that have the exact same symptoms. You can’t read people’s stories with the mind set that what you read is what’s going to happen. Some things you read may never happen to you. I look at it like this it is helpful in the sense that if you do have a certain symptom you will find at least one other person with the same symptom who can give you advice and sympathize and at the very least let you know you are not crazy. There are some of the kindest most supportive people here and you may not be in the place where that is what you need just yet but when you do we are here. It is a very valuable asset for those of us who sometimes just need to vent and most importantly just be understood. Lupus is one of those nasty things that can’t be seen necessarily but can most definitely be felt and so the only people who truly get it are the ones that are feeling it. When I read that someone has a symptom that I don’t I count my blessings and then my heart goes out to the one who is suffering.
Queenie that's good to do, it shows that there is HOPE somewhere -even if in's not us.....i take the knowledge from this site and apply it if i can to /for myself ,it helps me to avoid some things or just to know that am not alone in the PAINS of "Living with LUPUS".!!!!!!
Queenie - that is very well put! It made me feel better just reading it!
:-)
Thanks!!! And that makes me feel better 
I have had SLE for 20 plus years and never went to the hospital for a flare! I read all of the stories to keep myself informed, and live one day at a time:-)
I've had lupus for 4 years and have never gone to the hospital for a flare either. I think most people who get hospitalized with a flare are those with organ involvement - kidneys, lungs, etc... They often require big doses of IV steroids and other immunosuppressants.
I don't have any major organ involvement - the closest I've been is having inflammation in my lungs/chest that cause shortness of breath at times. But my doc manages that too.
I've heard so many stories of ER trips gone wrong, that I honestly feel like the ER is no place for someone with an AI disease, unless it's life threatening. Often times, they just don't seem to know what to do with us. :P
I try to take life one day at a time, or just one hour at a time, or simply one moment at a time. Never feel alone in your corner.
I have a battery of doctors, all wanting a piece of me. I go to the hospital when their remedies don't work. Trouble with lungs, heart, pancreas, liver, but my kidneys are untouched, thank God!
Hope that everything get better for you -smile take care and get as much rest as you can...Beverly L.