I'm a Newbie

Hi patty, how are you? My name is heather and my mom has lupus. She is 39, and has had it for 11 years. She has really really bad lupus, about two flares a year, or more. I can get you her number if you'd like.....She used to go around to conventions and talk about it bc she has one of the worst kinds ever diagnosed.

Hi, thanks for replying to me...I am new and it is exciting to finally be involved in this. I read your other post regarding your mom. My prayers are with the two of you. Lupus is a very hard disease because it is so unexpected. Along with that, doctors don't know very much about it. Luckily in my case I have only had two flares in 12 years, but it is definitely something that is hard to deal with. My parents have always felt so bad and helpless with this disease, because there are only a few options to help it along and no cure. When I do get a flare they feel so bad, and I am sure you feel the same way with your mom. I think it is really great that you are participating on this forum in support of your mom. I am sure she really appreciates it and I am also sure that you have gotten some answers to your many questions. I am hoping that the same will happen to me, and I look forward to talking to you on this forum. Godbless!

Hi patricia!

I've had lupus since I was a teenager...Diagnosed when I was in my 20s. It's tough having this disease when you are in your prime...Isn't it?

I've been in and out of the hospital since 2000. *sigh* but, on a good note, things have been better this past year.

nice to meet you,
ladybrannon

Hi ladybrannon,
yeah, it is tough dealing with this in your 20's. But, I am thankful that they finally figured out that I had lupus when I was 20. Before that, my first flare up was when I was 10, and because they couldn't figure out what it was, it lasted for a year and a half and was pretty bad. The only other flare up i've had was during my freshman year of college, which wasn't fun. But, luckily they diagnosed me and got me on medicine and prednisone right away. Since then, I have been healthy and I try my hardest to stay that way. Nice to meet you to and if you ever have any questions or need advice, let me know and maybe I can help you or you can help me have a great day!

~patty

Hey girls!!! Ummm...I was just wondering what "lupus" is??? It doesn't sound like very much fun, so i'm very sorry to hear that you have it!!! Anyways, just curious!!!

Hi magic_tinkerbell,
it is nice to know that you care about what the disease consists of, however, it would be hard for me to give you a definition, since it is different for everyone. Basically though, it is an auto-immune disease where your body basically attacks itself during a flare-up, which can cause all sorts of problems for a person. For example, in my case during my first flare up and before I was diagnosed, the first symptom I had was horrible migranes. From that it moved to bad fevers, then the muscles in my calves tightened up so bad I couldn't walk, then the extreme tiredness and weightloss kicked in, and finally I had a partial stroke in my face. The doctors were absolutely baffled by my case at the time, and after about a year and a half, it just stopped. Then, I had my seconed flare up when I was 20. That one didn't last as long because my rheumetalogist diagnosed me with lupus and put me on meds right away. I am now 22 and haven't had a flare up since my last.
I hope this kind of helps you...There are several different forms ie. Skin, organ, etc. Where different problems and symptoms occur. And, some cases are more serious than others. If you want in depth information on lupus I would visit www.Lupus.Org. There you will find tons of info.
Thanks again for caring and take care
~patty

Hey this is magic_tinkerbell, I just changed my screen name :d wow!!! That sounds so awful... I'm sorry to all that have it! I wish you all the best of luck!!! I have very bad panic attacks, but I doubt it's anywhere near what you have gone through. Anyways...If any of you ever need anyone to talk to..I'm here!!!

teresa