Wow.. i really dont know where to begin. i guess i will just start by saying, hi my name is Yen, I'm 21 and i was diagnosed with SLE lupus & kidney failure at the age of 17. i actually had the early signs of lupus when i was 14 but everyone kindda overlooked them until it all spiraled downhill. i didnt find out until i was on a band trip when my ankles had gotten so big that i didnt have ankles anymore, and not to mention the butterfly rash across my nose bridge & cheeks, and the sudden weight gain! it was just insane! as soon as i was back in my hometown i was immediately rushed to the hospital where they of course diagnosed me. i was put on prednisone and on a really strict diet. i was also on chemo ( cytoxin). the thing is, i have never met someone with lupus who had to go through chemo. a few years after i was diagnosed, i began to have seizures and horrible headaches. one night, i had a really bad headache that i was rushed to the hospital, where i began to have seizures, and went into a coma. it has been 3 years since that happened and i havent had a seizure ever since, but i was wondering if anyone has gone through any of the things i have ? i am a huge believer in God and i know he has given me the strength to overcome this but i would love to talk to someone who might have helpful tips. i am also currently on dialysis. i think thats honestly what has affected me the most. i sometimes feel alone when i am hooked up to that machine, and i look around and see that everyone else is 60 and above. can someone please help me? i know i should probably have the hang of this but the truth is, i really dont. thanks for listening, - Yen http://forum.wehavelupus.com/images/smilies/unsure.gif
Hi Yen! Welcome to WHL. Pull up a chair and make yourself comfortable here. It's nice to meet you. My name is Leslie. I have MCTD. (Lupus and Sjogren's and another we're not sure about yet). You've been through so much...((((Hugs))))
There are many people here that use chemo for treatment and I know there are a couple of us on dialysis too. I tried chemo but it didn't go so well for me so we're looking into trying something else.
Don't feel alone when you're there again...picture all of us with you. We do that for each other here about a lot of different things. We share the experiences we go through the best we can thru the internet. We are with you in spirit.
Sometimes it gets slow here but someone will come along. Someone is always around. We do a lot of chit chatting through PMing and on facebook too.
Welcome is right. Abbasgirl is right. You are not alone; everyone onthis site ishere for you when you need us.
Faith in the Lord seems to helps a lot of us
"the Lord doesnot give me more than I can handle, and like Mother Teresa; I just wish He didn't trust me so much"
you have been through so much for such, and at such a young age. i hope you are doing ok today. I take chemo for lupus, i use methotrexate. I give myself a shot every monday night, and struggle through tuesday, but by wednesday i am feeling better. I have been on mtx for over a year now, and believe it helps me feel as good as i do. I still have several bad days each week, but i do enjoy some good days.
my kidney is borderline functional, but i have not had to go on dialysis. I imagine that you do feel weird when everyone else is so much older, but thank goodness the drs. found the problem and are doing what they can to help you.
we have several members in their teens and early 20's....i hope you will hook up with some of them soon, and find friendship among our diverse group.
just remember, we are always here (although sometimes slow in responding), and we all share with each other, and help each other through the tough times.
share a smile today
aww thanks guys! that means so much. this is the first time that i have talked to anyone about my lupus.