View Full Version : Dealing

10-22-2009, 02:08 PM
How do you all deal with having SLE? Do you think about it all the time and wonder what's happening inside of your bodies? How do you shake being scared?

10-22-2009, 10:32 PM
I try not to think about it, but it never works for me. It's a constant reminder for me that there are things going on in my body that I don't have control of. It is hard to deal with, espeacially the FATIGUE. that has been heck on me! The other one that bothers me alot is the BRAIN FOG. I can't seem to carry on a an intelligent conversation if my life depended it. It comes out all wrong. gibberish mostly! It's hard really hard not to think about it. That is why I come to this site! People care and know exactly how you feel and why. I am scared too you are not alone.

10-23-2009, 07:06 AM
Sometimes, when I have a good day, I almost forget, but then the next symptom or pain hits and I remember. But I am at a point now, where I don't let lupus rule my life. I do what I can, when I can. On bad days, I just take it easy. I have had my dx for three years now and I have learned to live with it. I muddle through the bad days and enjoy the good ones. After a while, you know, that even after alot of bad days, a good day is just around the corner. It is hard to believe, but you too, will get used to it. Everybody will find a way to deal with this illness. You just got your dx, give it some time.


10-23-2009, 08:15 AM

I plod along, take each day as it comes...as we all kno everyday living with lupus is a diff one.....look forward to the good times, and try and forget the bad times....laugh at the silly things the lupe doesnt let you do (that day, as u kno you will be able to do it tmrw),

Live life to the full, talk to ppl from here when ure feeling down and share with your friends from here when ure having a good day.

One day we will get that cure......be positive


10-23-2009, 09:54 AM
You have to keep a positive attitude because we did not ask for this but it has been given anyway and we have to live with it and not let it rule our lives the best we can . God Bless Bonita

10-23-2009, 01:35 PM
Nicely said Debbie and Bonita!!! :yes: IT IS a lifestyle change. Jenny, its new to you hun and i believe almost alll of us (if not all of us) felt as you did in the beginning. You will learn what your body is telling you you can and cannot do, just make sure you listen to it.:cute: Like i said before to you, get the RIGHT drs and GOOD drs in your corner to monitor you and your body. YOU will be OK as long as you LISTEN to what your body says. ANY NEW symptom you FEEL, get it checked out. With this disease,its BETTER to be SAFE than SORRY. Ive taken up NEW hobbies, made some adjustments to my old hobbies,i REST when my body is telling me to, i eat right (most of the time! LOL), i have educated MYSELF and my FAMILY on this disease (i know MORE than MOST drs ive been to!), and i have my journal to jot down what my body is doing. CHART it ALL HUN, THIS WILL HELP. YOUR body WILL TELL you when something ISNT RIGHT sweetie.


10-23-2009, 03:58 PM
I was scared but once made sure myf amily was ok in case I kicked the bucket all the fear went away.

Also, kinda lost the fear once I was told I needed heart surgery -

Only think about it on my bad days or when I'm advocating for other patients.

or my heart starts doing funky things

10-26-2009, 12:15 AM
It is very hard when you are first diagnosed. You are learning how to maintain the disease along with accepting that this is now in your life. I used to lay in bed and think about the pain I was in and wonder how my own body can do this to itself. I told my doctor about all of this and she suggested that I go talk to someone. I found a therapist who actually specialized in helping individuals deal with life changing diseases. I went a saw her every week for over a year. She taught me how to deal with everything in a positive way and not to get lost in the depression our disease can cause. In the end I had accepted what was happening to my bosy and I knew that I was still in control. I understood that I deserved to be loved and to be very happy even when I had a disease that would affect my life and my loved ones lives forever. She really saved me and helped me get through the first few years. You may want to look into going to see someone who help you get through this. It does get easier and you will get used to it. You will find a way to deal with this in your own time. Just promise me you won't hold all you thoughts and feelings in. Tell us about everything you are feeling. Tell us when you feel alone and you will realize that someone else is feeling that at the exact moment as you...........that really helps with the isolated and lonely feelings. You will get through all of this and we are all here to help you every step of the way :yes: Keep your chin up and keep a smile on your face!!!!!!! Tonight I am sending you healing thoughts and lots of gentle hugs :hug:

10-28-2009, 12:46 PM
it helps me to know that im not the only one out there.
you have to just take one day at a time.
i have my good days and my bad days.
stay strong!!! (: