i have an online friend with lupus. ive learned a little about it from her.question is;how do i encourage her in this life long ordeal? ive never met anyone with it in real life. please send me all possible ideas on this.
Lupus is kind of like a rollercoaster ride, although it's not fun and you don't choose to ride it. With a good doctor, a good attitude, taking meds, avoiding stress and the sun, and being attentive to "warning signals", it's manageable.
A great resource is the lupus foundation's website (I think it's lupus.org) and the arthritis foundation's site arthritis.org. The Arthritis Foundation offers a wealth of information online as well as brochures.
I think it's wonderful that you want to learn more about the disease. Many folks hear "lupus" and think "Whoa!" but don't know what it's about. Everyone's disease manifests itself differently but it's far from being a death sentence. I have my bad days, but they usually happen when I've strayed from taking care of myself. I live a very active life but I've modified it to be able to "disappear" and rest/recuperate when my body tells me to.
If there is anything else I can offer, let me know...
my friend lives in canada where they have socialized medicine. it takes months to get dr appts from phone call to actually seeing him. she once did receive medication, though i dont recall what it was. it had adverse effects. she learned she was allergic to it and hadnt known it! she seriously needs your prayers as well.
She can get lots of free information from the arthritis foundation's website - arthritis.org
Perhaps she can find a support group and get feedback/direction from them.
She's got to take the first step in dealing with the disease - it makes it a lot easier when there is a support system (especially nearby) that can help. (nothing against your help, of course - but if she feels like crap and isn't able to do chores around the house, it's great when there's someone to rely on)
she's had lupus for at least 20 years if i recall correctly. problem is, when i tried writing a post to help her, she mostly complained that i'd done so without her knowledge or consent (all i'd wanted to do is help) and that i'd gotten her history inaccurate(which i'd not realized i had).however she was also happy that i'd wanted to help. then she'd not wanted to involve herself for a long time because she'd "not wanted the whole world to know who she was" and that she was new to the board and trying to get help.she was shocked when she learned that 15 people had viewed my post. (so?) this is on "the lupus site". how do i encourage her when she's got such an attititude?
One very important thing you need to know about lupus, is that it causes irrational thinking, depression, irrational actions, and downright witchyness. When she seems irrational...she might be. When she's depressed, she's REALLY depressed and no amount of talking is going to help because it's not an emotional issue, it's a chemical issue. So, saying this, do NOT ask her if she's having a Lupus moment when she acts this way, and don't always assume it's her lupus when she backhands you. Sometimes it might actually be you . In the meantime though, try your best to understand her moods as irrational as they may become. She'll eventually start talking to you again and you can make amends with your new info. Assure her that she's great and you want to help so you are going about this the best way possible, and let her know that if she wants to keep you off message boards that she can tell you how to help her, but in the meantime you'll do whatever it takes whether she likes it or not.