View Full Version : Hey!!!!

08-13-2006, 07:29 PM
Hey, Everyone my name is stefanie and i have had lupus for about 5 years now. I got it when i was 13 and i am now 18.when i was 13 i started getting really sick and saw about 5 diferent doctors before things turned for the worst and i got really sick. I had full kidney failer and about 3 days after that they found out that i had lupus.I also had to do 2 full years or cemo. i felt scared and alone i did and still do not no anyone with lupus. Last summer i was put back in the hospital for phyto tumer and kindey failer. It was a bad summer. I also went through a fase where i thought hey what was the use , why should i even take my meds and i stoped taking my meds for over 2 years and well,, i had to pay for that. Growing up my mom always told everyone that i had lupus like my school,friends of the family, or just anyone and i dont know about any of you but i did not like it one bit. I started to see that people would treat me very diferent. Well, for alwhile i was sick and my mom was sick so i never really had a job so i just got a job and it is killing me i am a server. And it takes alot outta me and i never told my boss that i had lupus, its not cuz im scared its cuz i really dont like the whole pitty party that you get with it. Ya know ? I just wanna know if there are any other people out there who is going throgh what im going throgh. kindda? I think it would be nice to finally meet or talk to someone who understands that there are days that i really am sick and its not all in my head. so get back if thats you!!! :wink: :wink: :wink: :D :P :mad: :angel: :shocked!:

08-14-2006, 07:48 AM
I'm old enough to be your mom, so I hope you don't mind if I talk like it sometimes. My name's Noel - I totally understand the chemo because I had it for a year and a half. Also had three bouts of kidney failure - needed dialysis which was definitely not fun. Things got better when the docs finally figured out what meds worked for me. I understand why you don't want to tell your boss about having lupus - it's hard for people who have never been sick to understand what it's like when you never really feel good. I know it's really hard to get a good job at your age without much work experience. Are you thinking about going to college?

08-20-2006, 08:06 AM
Every single one of us here knows that IT IS NOT IN YOUR HEAD!!!! :lol:
Every thing that you feel is very real and not your imagination.
My daughter was diagnosed at a young age and, like you, did not want to tell anyone of her disease because of the pity party. So, like you, she continued to try to work and go to school full-time. The problem is, that was harder on her than on anyone else around her. The same is true for you. Right now, you must be concerned with your health....first and foremost.
I always say, let people know that there are reasons for your fatigue, reasons for your symptoms and reasons for your varied illnesses. Let them react any way that they want to as long as they respect the fact that YOU ARE NOT FAKING and the YOU CANNOT DO EVERYTHING THAT THEY CAN DO. They need to understand that your most important job is taking care of your health. If they want to pity that..let them. That is their shortcoming, not yours! Their pity has nothing to do with who you are. Finally, my daughter just flat-out started telling people "I didn't tell you this for your pity. I don't want your pity, I want your understanding!!"
You are in charge of YOU!! Stand up and fight for your health and your right to take care of yourself. Granted, with this disease, it can be a very difficult fight sometimes, but it is one of the most important ones that you can be invovled in right now!
Look at how many of us here have lived years and years and years with this disease and have had good lives. You can do that also...but you have got to start taking charge of your health, your body and this disease! Take your medications, make the necessary lifestyle changes, demand answers to your questions from your doctors and "Drop-Kick" those people in your life who do not support and cherish you...you don't need them!
And, come here to us at any time at all. We are here to help you get through this and to give you support, comfort and understanding!!
Take Charge...Start RIGHT NOW!!!
Peace and Blessings

08-21-2006, 12:56 PM
Welcome Stefanie! Well as everyone has said it is not all in your head! Many people just do not understand what it is like to be sick and how to adjust to things when others are sick. Being a server is a demanding job on your body so take care of yourself. I was also diagnosed when I was young. I had chemo over 5 years through grade school and high school. Not knowing others with lupus can be hard especially when you are young. Many of your friends do not understand what you are going through because they don't experience it. And it's also hard for them to understand what it means to be sick like that at a young age. We are glad that you found this site and you now have others who understand what you are going through :D And I will just say that I understand not wanting to take your meds but it only gets you in trouble when you don't! So make sure to take them and stay healthy! :D