hey everyone, i'm new, i have had lupus since birth. i'm 15. they don'tknow what type i have. (that's what my signature is about). i am very photosensitive, i respond a few months later. my hands swell up, with a red rash, they crust over, become hard and numb. the same happens to my lips. i am so photosensitive that i need spf 60 and the sun still gets through! i was in budapest during the heatwave, now i'm paying for it. i have no energy, my sun is very bad. a couple years ago my lungs started to get bad. i got sick first with pnemonia, then bronchitis, then sinus infections, then strep, pnemonia again...etc etc. i also got interesting combinations of them. it was quite entertaining. one day they told me, you have a major sinus infection and bronchitis. i said 'oh, 2 for a change!' and laughed. it's all you can do, laugh. but whenever i go to my doctor, he checks me out, my glands are swolen when i'm bad, my breathing a little timid. i go across the street and get a blood test (sometimes 13 viles) and a lung xray making me wear one of those paper tops without a back that falls off! AAA! minor, but big for a 15 year old girl! does anybody know if maybe my lung problems are related? last night i tried to hold my breath as hard as i could, it hurt really badly in my lungs. like a pressing feeling. :? but yeah, i don't know if i've had these problems since i was little because when i was little my brother who has cgd was extremely sick, in and out of the hospital. so anytihng that i had seemed minor and miniscule. if i had a cough, my mom just dismissed it as me trying to get more attention and told me to buck up. until my brother started progressing nicely (he's now 18 and about to live on his own), we went to the doctor because i had a nasty cough, pnamonia! anyways, i am very pale because of the photosensitivity, my mom was paranoid and slathered me in spf 60 since the day i was born. i don't have a rheumatologist, but i have a gp, an ent doctor, an infectious desiese guy (who knows absolutely nothing, he looked at the peeling skiin on my hands after i had been to him like 5 times and said 'exhema' (did i spell thtat right?)), and a dermatologist in vancouver. right now i'm living in europe, could that be part of my painful breathing and my constant gut/lung coughs? thanks for any help, lel
ps. can anyone tell me what it feels like to be without lupus? how does it feel to have energy and be able to get a good mark in pe?! lol!
no one is like me, no one has ever seen what i have, i have doctors who don't know what to do! i have special doctors who don't know what they're talking about!