View Full Version : since birth...

12-04-2003, 01:51 AM
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!

12-04-2003, 02:12 AM
Hello and welcome to our forum. Your lung problems may be a result of pleurisy. This is rather common for Lupus patients. Approximatel 60% of all lupus patients suffer from pleurisy at some time during the disease.
Pleurisy is an inflammation of the lining of your chest. The symptom is pain - often a "catching" pain when taking a deep breath. Pleurisy can produce fluid (pleural effusions) and this takes away from your breathing space which causes a shortness of breath.
A chest X-ray can usually detect pleurisy and steroids usually will take care of the problem.
Ask your doctor to do a chest X-Ray for you to make sure what is causing you pain!
Let me know how it goes!
Best Of Luck

12-04-2003, 08:06 PM
Hi lel,
You have definitely been through a lot! I have recently been diagnosed with lupus and I am 14, but like you say, it is better to look at the bright side of life. I always feel a difficulty explaining to the teachers that I have photosensitivity, I mean, how do you tell them? It is not something you can SEE and they sort of give you that kind of "pleaseeee" look(even with a doctor's letter!)
I still like to participate in PE when it is indoors, gathering lots of aches and pains in the process, but it is fun and i do not really concern myself with them. It's great to know there's someone who is about my age after all! Hope to hear from you soon!

12-07-2003, 04:03 AM
hmmm. jukebox! i'm so sorry you just got lupus... you know what your missing, but then again, maybe it's better to once have been able to do stuff! i'm lucky. my highschool is great, it's a public school (did i already say that before?), but has great teachers. my pe teacher in grade 8 was crazy about me. he knew i was honest. so if i said that i couldn't go into the sun because i was photosensitive, he believed me. i sat inside most of the time and did homework and talked with friends. it was interesting, i like sports too, although i have learned to almost detest them... anyways, when i was around grade 4 or 5, i went into gymnastics. i knew i was joining late, but i really wanted to do it. so we went to the different places in town, the first one seeing me in a group try out class, and saying 'we want her to be training 5 times a week' all i wanted was once a week or maybe two. so i went somewhere else, but anyways, gym was very good for me. i was with a bunch of little kids so i was the strongest. i became very strong for a year, and my flexibility improved a lot! i felt really good after. anways, do you like school? have good friends, even a 'special' friend :wink: haha! not me....
thank you for the help about my lungs. when i breathe in, i do get often a sharp feeling, but most of it is aching... shouldn't the xray's have shown if there was fluid and such? i've had enough of them... but here's a question, my xrays showed a lump type thing, i don't know. but it showed up on my xrays as a white spot. it went up and down depending on how sick i was. so with strep, it wasn't too bad, but with pnamonia, it was... do you know what it could be, or if it could be related to my lung problems? thank you everyone!