i was newly dx

[lupuskid2005]

hi everyone my name is melanie and i was just dx with SLE lupus...i have alot of questions and i hope to make some new friends... i feel that this is somewhat better then going to one of those support groups.. b/c i don't have to see who i am talking to... i live in bourbonnais IL.... if anyone could answer these plz do so i would love to hear your imput...

how do u deal with all of the meds like the things that come with the meds...

how do u tell your friends or explain to them y u are so tired or something..

does it affect anyone in certain activities..

i no that everyones lupus is diffrent but what are some of the things that flare yours up...

i guess thats all for now i hope to get some answers

plz wb
Thank you
~melanie

[katrina]

Hey Melanie,
My names Katrina and i'm 16..i've been diagnosed for about a year and a half now. I live in Ontario Canada. Lupus is a really challenging disease and not alot of people know about it so its hard to make people understand what you're going through..especially since they've never had to really deal with anything that serious.

1) K, my meds used to drive me crazy! I hated trying to remember all the ones to take and the times i was supposed to take it. And i used to have to take some at lunch time during school and i hated taking pills around my friends it made me feel so uncomfortable..and the side effects ugh! If you're on prednisone like alot of us it can make u gain so much weight..and i was on chemotherapy..so i lost some hair..and was sick alot..but eventually when they get the disease under control and figure out what meds to get u on it DOES get better. It just takes a while. I'm still on like 8 different meds but taking them is just a normal part of my day now i think it would be weird not doing it.

2) It's really hard to explain to your frends what you're going through. They still have everything going on in their life and most of them won't be willing to put it on hold for you. Since i've been sick i've lost alot of friends..but i definately know who my true friends are now. U can't make your friends understand what your going through becuase it just doesnt work and it makes u even more tried and upset when they dont understand. Don't worry too much about it though - ur family will always be there to support u!

3) I used to be in kick boxing but i found it would tire me out too much and i would get really bad migraines and stuff so i stopped that. Now i run and work out when i have the energy. Some days are better than others though because i find some days my energy level isnt as high so i just gotta take it easy. But physical activity is important, even if you just go for a short walk - try and do something to keep yourself mobile..and u'll feel better about yourself after you do it.

4) The sun will make me flare up if im in it for a while and not wearing sun screen. If i'm stressed it can cause a flare up. I find i get worse in the cooler weather. Um i guess it just depends how the disease is doing.

I hope my little bit of input helped..if you need anything else just let me know or if u ever wanna talk u can e-mail me at xo_katrina_ox@hotmail.com
Love Katrina