Hi, I was diagnosed with SLE in 2001, after having symptoms for almost 10 years, being told there was nothing wrong, it was all in my head, or my favorite, growing pains. I'm 21 now, and hate being the only 21 year old I know who gets their kidney function tested on a regular basis, and has to take "my morning mixed drink" of medicines every day. It's hard to explain to my friends how it feels sometimes to know that I have this terrible disease, and how scared I get sometimes. Like last week, when I was in for a pap smear, and my doctor suddenly decided that a kidney function test was a good idea. I was in there feeling just like any other college age girl, completely uncomfortable with my legs in the stirrups, and then she had to remind me that I'm not like every other college age girl. It gets frustrating sometimes. I googled lupus bracelet and found this, so maybe I can gain something from the rest of you.
Its a difficult situation to cope with.
It has cost me my job as a nurse and left me struggling at times to function with my life. I am 51 but feel very sad when youngsters like you are struggling so much.
I need a purpose in life and have set up a support group inLeicester England where I live. I have also built a message board, half fun, half information.It gives me a purpose again.
I was in denial for many many months but even now i have reached acceptance of the situation, i don't always like my life.
Its good to meet fellow sufferers who understand but i also like some "normality" in my life.
Look forward to getting to know you.
My site link is at the bottom in www if yoy want some fun and info.
Awww, azgirl! I hate to hear someone so young in such despair. I, too waited 10 years to know for sure what was wrong, and I get tired of all the meds every morning and afternoon and evening.
I sincerely hope your kidney function tests turn out OK. If you ever wanna talk about anything or just want a shoulder to cry on, I'm here.
My daughter, like you, was in college while dealing with this disease. Also, like you, she just wanted to be normal, to be able to do the things that you go to college to do. She was very saddened and depressed and, like you, felt very isolated. I know you may not know this, but there are so many young people your age who are also dealing with this illness.
I mentioned, to another member, the services available from your disabled studen't's union, they can offer help with your classess and make referrals to other agencies that can help you deal with the emotional difficulties of this disease.
I know how difficult this is for you, being so young. My heart goes out to you and we are here for you!!
Please, stay in touch