hi, my name is joy. but in the sca i go by sarina rose, along with other things like this site. i have lupus and i was diagnosed when i was in 10th grade. 15/16 years old. i'm 21 and have a 6 month old and a 21 year old (not kid my husband) but i really really need people who understand to talk to. i guess i really need a few hunderd shoulders to cry on.... but whoever will do.. haha. i really need some advice right now. like how do i get friends and family to get this pleuge called lupus. my husband just doesnt get it at ALL and friends i think dont want to get it. no one belives im in pain. i dont understand why they cant understand . does anyone else have this problem? how do you people cope with idiocey and lupus. ok well thanks for reading this. ~Joy*
I am new on this website but not new to the pain and misunderstanding of Lupus. My husband left me in June after 12 yrs, found a 29 yr old who is healthy. And after I found a boyfriend I wound up in the hospital with a Pulmonary Emboli and a Brain Anuersym. He took off too! Lupus is a wicked disease that not many understand. I would love to be your friend. Judy
Dear Joy, Welcome, from one of your new shoulders!
I'm glad you found this group. People here WILL understand. And as for your family & friends, would seeing a few key points in writing help? There are some excellent hardcovers on lupus, written by well-known rheumatologists, which you could find in most libraries & bookstores. One author is Dr. Daniel Wallace & another is Dr. Robert Lahita. One of the most interesting things I found in these books was a list of problems typically encountered in lupus, with a percentage for each. At the very top was fatigue (which doesn't surprise any of us, huh?)
I've certainly read in various books & articles that women often flare during & right after pregnancy. Are you more tired now than during your typical flare? Are you on medication? Do you have regular follow-ups? Avoid sun? FYI, the authors I mentioned cover pregnancy in lupus, too.
Hang tough, OK? I hope you keep posting. Bye for now, with best wishes, Vee P.S. Congratulation on your little one!
thank you i really apriciate you being here. i think i might stop bitching about my husband so much now..... but you both have really help just within about a 5 min period. it makes me soooo soooo happy to know people are here whenever and whereever i need help. you know my teacher just found out she has lupus and i think my mom might have it... but its good to know that there are people to talk to and shoulders to cry on. thank you soooo very very much. and i'm glad i found new friends, i like good, nice and caring people. (their hard to find) hugs, *Sarina~
i was wondering mamalaa and veej, can i e-mail you or are you a part of a instant message board, or ******* or somthing. i would like to chat with you one on one. if not its cool we can "hang" here. lol thanks for the shoulders again. ~Sarina*
Judy, I just want to say that I'm very sorry that you've had men in your life unable to cope with your illness. I think often of a poem (can't remember title or author). Anyway, its key line is something to the effect that "Inner peace comes from within, or not at all."
You truly didn't need ANY of this! But I hope that time helps you find yourself---your best self---in all this. Not a saint, mind you---just someone who sees the complexities of life more clearly than many, and who can savor it in spite of the burdens you shoulder. Thinking of you & sending best wishes, Vee