World According to Lupus

Feeling lost :(

I am posting because I have an 18 year old daughter, mind you she had just turned 18 12-26-2014. Anyways, we found out she has Lupus this past March :(.. By the time we found out she was sooooo ill that she could not dress herself nor go to the bathroom without us picking her up and taking her. since, we have found out that 10% of her kidneys have failed and now she is having memory problems. ( Need to let you know that this child has been on the HONOR ROLL since she came into this world!) She is due to start UCA next month, but with her illness she just feels like giving up..... I NEED HELP PLEASE!!!!

3 Replies

Everyone's experience with Lupus is unique. Luckily, you now know what is causing her issues. She will recover from this and will begin to feel more like herself with treatment. It can't be rushed. I know it's scary. Her focus now should be resting and getting better. It's not the end of the world to postpone college for a semester if her health is a huge concern right now. It would only be a blip in the bigger picture and would allow her to be better prepared for the stress that college can bring.


I'm extremely sorry to hear that I feel her pain because I'm going through the same thing and fortunately lupus is no justice we have to live an hour at the time and one day at the time and try not to give up support is exactly what We and she needs much love Sara from Boston


I somewhat reached that point last Novemeber at age 23. I was an honors student all throughout my education as well. The issue with that is any type of perfectionist or type A personality that comes with it. Even when you're sick you have this feeling like you need to excel even with the sickness. The sad part of it is that, that is where you can screw up. Life is not about straight As. In fact, when it comes to Lupus, it is those straight As that you want so bad that can actually screw up your health really bad. This needs to be communicated to her. My parents used alot of tactics on me, but honestly the tactic that worked the best, but again, everyone is different, were scare tactics. If you go in the sun, you could get sick again. If you do this, then you could wind up in the hospital again. If you do that, you might have to take more steroids and your face will get more round. Do you want that? The answer is NO. If you do that, you might end up paralyzed the next time you're in the hospital, you almost were last time. If you do that, you might have to get more chemotherapy. That is my advice to you, otherwise get good doctors, trust me if you see enough of them you will know who is retarded and who is good, your daughter is supposed to know her body best, but sometimes you are supposed to know it almost as equally as good as she does when she is too mentally and physically weak to manage. She is relying on you to prevent any further damage from happening. Online research can often be nerve racking but in the end, the more you know, the quicker you can see symptoms before they get worse. Your daughter will thank you in the future. As for school, I say hold off. She's only 18, she has time if you give her time to heal. Later in life she will realize that there are more important things in life other than school. This is me now. It is not worth the sacrifice. The sacrifice could cost more in the future.