View Full Version : Hello!
07-10-2012, 08:37 PM
My name is Kristy and I'm 21 years old...I just joined and to be honest I'm a bit skeptical about it, but I think it's time to try to meet other people who understand what I'm going through. I've had extreme fatigue and joint pain for as long as I can remember, but it got worse in late high school. Then, in the spring of last year, I started having extreme swelling and pain in my joints, and fevers. When I finally went to the doctor, ana turned up positive...the pattern wasn't too surprising since lupus runs on my Dad's side of the family. I'm sure you all know the rest. Right now I don't have enough antibodies to officially be diagnosed, but according to my doctor, it basically just a matter of time; my ana is going up and I now have some fun new proteins in my urine(!). The prescriptions that I'm on have helped some, but I'm still struggling.
I want to know if I'll be offending anyone by being on here; I know where I'm at health wise isn't as bad as a lot of people and I don't want to take away from that, but I am hoping to find some kind of support, as things seem to be getting worse and it's hard to find people who can relate to what I'm going through.
Thanks, and again, I hope I haven't been offensive!
07-10-2012, 09:29 PM
Hi Kristy, I am also new. I first got Lupus when I was a freshman in highschool so I relate to you. I had bad arthritis pain in my knuckles and hip, got very fatigued, and got fevers. I had protien in my urine....that indicates that your kidney may be involved. My kidney was. I was first diagnosed with Juvenile Rhuematoid Arthritis before the Lupus diagnosis came......this was 47 years ago! I went through alot but I'm still here and without pain. Diet is important..keep it up. I also suggest when you get your energy back that you begin a regular excercise routine. I did that when I was 19 during a remission of my Lupus. I never had joint pains with future flares again. I have led a full and happy life. I am a teacher and a mother of two girls. So your future may have some stumbling blocks but you have a great life ahead!! Really sounds like you have Lupus...hope they determine soon what's going on so they can help you get back to good health. Linda
07-11-2012, 06:20 AM
Welcome! I just wanted to assure you that where you are in your life and with your illness should never be offensive to anyone. I have been on this site for about 3 months and everyone is extremely supportive and welcoming. Lupus effects everyone differently, but collectively we can all come together and support each other and I hope that's what you find here.
07-11-2012, 08:10 AM
I was skeptical about joining this group too but it is simply amazing. The moderators do a really good job of keeping things helpful and positive; members are loving and supportive; and it's an UNPARALLELLED source of information. It's one thing to get information from doctors and books - it's quite another thing (and far more useful, I think!) to get information directly from other people who know what it's like to deal with this stuff on a daily basis.
Lupus affects every person differently, so nobody's lupus is exactly like yours, but we share enough common experience to learn from one another.
And as for "not being sick enough" to be on here, don't even think about it. Like I said, Lupus affects each of us differently - in terms of severity, or what body part it attacks, or how our family reacts, etc. We all go through flares where it's worse, and (wonderful) times when it's not as bad. We are on a wide range of medications and so on....I guess I am in the mild-to-moderate end with some episodes of pretty bad stuff, and I have lost hearing in one ear to Lupus. I have learned SO MUCH here on how to care for myself, what to expect from medications, what to expect from my doctors, which questions to ask, and what to look out for down the road - I feel like this site keeps me healthy as much as my doctor does.
We are not doctors here so run everything through your medical team - but people here do have a wealth of experience to share.
07-11-2012, 08:51 AM
this is my first ever web chat site also.....
and now i am one of the moderators here.
everyone is welcome here, people with lupus, people who know people with lupus, family and friends of people with lupus, and anyone who is compatinate to people with lupus.
we even let others in, who dont fit the above criteria.
we do however stop at spammers, there life here is short lived.
please take the time to read a few of the older posts.....
they are our personal experiences with lupus.
also there is a stickies section at the top of each section.
stickies are normal threads, that have important information in them.
other threads are important too, but these are special.
welcome and please look around.
07-13-2012, 03:02 AM
hi kristy welcome whl family
07-14-2012, 10:15 PM
Welcome to WHL. You will always be welcome here - the severity of your illness doesn't matter a bit.
You will find that there are several people your age who hang around here, so you will find some very understanding support.
Welcome!! I'm 21 too and was diagnosed in my freshman year of high school. Your story is pretty normal here, we don't rate here on how sick one is. I came to appreciate how nice everyone is here and were all going through this endless cycle of being sick even if your doctor didn't diagnose you doesn't mean your not sick. I hope things get better soon!
Welcome to WHL! We are really glad to have you.
07-16-2012, 10:50 AM
Thank you, everyone...I appreciate your support and advice! :)