new member; recently diagonsed
Hi, my name is Amber and I was hit with the bad news at age 19. It all started when I was unable to walk down the stairs. I couldn't believe that I couldn't get up the stairs to get to the bathroom or my bedroom. What was wrong with me? My mom thought I had fluid on my knees because they were so swollen and red; it looked like they wanted to pop. So my mom would rub icyhot on my knees at night. Some days I would not experience any symptoms but then some days I would, like REALLY painful chest pains.
These symptoms would come and go, so I didn't rush to the doctor. Before I was diagonsed I was and still am a full-time college student and full-time worker (working 40plus hours), so I just kept going on with my daily rountine. If I wasn't at work, I was at school and vice versa. So I really didn't have the time to go see a doctor. Not only was I full time at school and work but I was also commuting from Palmdale, Ca to Santa Clarita and to Northridge, Ca. My commute was at least an hour and a half or more.
I finally got really worse to where I was walking as if I was one of my elders. I was unable to comb my hair, brush my teeth, put my clothes on. Nights where I came home from work, I would just sit in the tub and cry because I just didn't know what was wrong. I just kept looking around at all the vibrant, energetic teens around me and it only made me feel worse. I just kept thinking "I'm only 19!!! What's wrong with me?" I also have a job where I stand for 8 hours a day, so before I was diagonsed I thought the swelling in my feet was because of standing so long or the shoes I was wearing. but it wasn't that at all.
I finally went to the doctor and was told I had sle lupus, pnenomena (oops; sorry spelling) and my whole left lung was filled with fluid; which had to be drained.
I'm doing alot better now but more changes have occured like the "brainfog" i'm starting to feel as if i'm not as smart as i used to be. I know that sounds absurd but it's true; that's how i feel. I also feel lonely as well. I don't have anyone I can relate to as far as the symptoms and to let me know mentally that I' m not going crazy.
I'm new to the site and hope i'm able to meet someone to talk to. :cry:
You too shall overcome this!