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lilymiaomiao
04-08-2009, 06:16 PM
Does anyone else have family who has been diagnosed with that? My uncle and aunt have it too, but i never knew how serious it was until now, now that my own father was diagnosed last month.




The description on wikipedia makes it sound so gross and horrible!
I know it can be fairly mild, and not half as bad as a lot of other things, but I just hate thinking about the fact that my dad is sick and getting old.

It makes me feel guilty about living far away from him and not being around to keep him company and help him out with things. I also feel especially helpless because there is no cure, and I'm afraid that I'll have to watch him deteriorate in the next few years.
:(

verfolgung
04-08-2009, 07:14 PM
It can be such a heart wrenching experience to watch a loved one have to go through a long-term terminal illness such as Lupus.

The one thing you do have is some time remaining to share everything you can with your father. Sometimes we take our lives and our loved ones for granted and they are taken from us suddenly. You will at least have some time to call him, write him, visit him and be with him.

Take care.

Kylea2
04-08-2009, 10:02 PM
I'm so sorry! I've had family that was diagnosed with some really terrible things, but never lupus.

The father of one of my best friends was diagnosed with lupus though. I kept urging her to move closer to be near him and she hasn't done it. I know how terrible it is to lose someone and feel like you didn't get to spend enough time with them because you were tied to work/school/whatever. My advice is to spend as much quality time with him as you can... because the worst thing I have ever done that I feel the most guilty for is not going to be with a family member that was sick after my work denied my vacation request - and the family member passed on and I never got to say goodbye.

Move or go see him lots, just in case. They may be able to treat him, but it's better to be with him than to live with the guilt that you didn't spend enough time with him.

Lemonz
04-08-2009, 10:19 PM
My best friend and former college roomie was just diagnosed with lupus last year as well- at age twenty. Hers has been mild and not so bad- she takes medication for it and it's been okay so far. I hope it stays that way, and doesn't get worse later on in life when it'll be harder to deal with.... :/

tRoUbLeMaKeR
04-09-2009, 05:06 PM
I'm sorry to hear about your father. all of us are here for you...feel free to PM me as well if you need soemone to talk to one on one.

My mom was diagnosed with systemic lupus about 10 years ago. She's been through a lot of ups and downs with it. It hasn't been an easy road but she's still here, which is something to be thankful for. I sometimes wonder though what is worse for her, the lupus or the medications she's on because of it - they can be very unforgiving. The thing to keep in mind is it's different for everyone. How long ago was he disagnosed?

lilymiaomiao
04-13-2009, 04:58 PM
How long ago was he disagnosed?

About a month and a half ago? But he might have already had it for the past year or two or so, because I'd noticed his growing fatigue and lack of energy compared to the way he used to be.

tRoUbLeMaKeR
04-13-2009, 08:03 PM
At least in my mother's case it's taken them a long time to get her somewhat stable on meds and to figure out how the lupus is effecting her. Hopefully it'll be smoother for your father but just be prepared for anything. :( Lupus support groups and advocacy groups were a good source of support for my mom and my family...something to look into for you or your family in the future. Being there to listen and be supportive is going to be very important for your father at this point. I'm here for you...

lilymiaomiao
04-16-2009, 07:23 PM
Thanks for the support, everyone! I'm going to see him in person next month, so maybe he'll feel more comfortable talking to me about it. He's very dismissive about it on the phone and never wants to say much or tell me how he feels, even though I can tell he isn't feeling well from the way he sounds.

swaly
05-02-2009, 10:42 PM
Lily when Papa Lu is in town you should let me sing Ye Lai Xiang for him this time

J.D.
05-15-2009, 04:19 PM
I was diagnosed with it (SLE) about two years ago, when it flared up really bad! That's rare that your father has it, it is much more common with women. I was on major medication to get the flare up under control, I took methotrexate and Enbrel, as well as something that they put in me through an IV for about an hour once a week. It was terrible! But, once it was under control, I stopped taking all the medicine and controlled my diet and now I'm fine. Your dad should take a heavy dose of high quality fish oils every day (I use Arctic Oils brand) and Curcumin. Curcumin, or turmeric root, is sooo good for you! Many people say it prevents cancer. Also, no dairy or red meat. Hope this helps! I think he will be fine, it's not as serious as many people think.