Friends

I have some terrific friends in my life, they are really the best kind of people. I connect with them on every single level.. except the lupus. Whenever I need someone to talk to, I know I can not go to them. It's very hard for me that something that's such a big part of my life, they barely know anything about. They don't know the day-to-day struggle of living with chronic pain & there is no way I can make them understand. While they go through the normal anomalies of being a teenager, I have to worry about these things that are much bigger & it makes me feel very left out. I can't have the normal 17 year old experiences & it really kills me sometimes. I don't get to be a worry-free teenager & none of my peers understand that or understand why I can't do things with them sometimes. It wears on me mentally knowing how different my life has to be due to this. It's just not fair. Why does this have to be my life? Sorry if this is so depressing but I need an outlet to talk about these feelings. This kind of talk just scares my friends & makes them ignore me, so this is all I really have.

Work

So, I work at taco bell. I have been working there since July 2012 right after I turned 16, so I got my diagnosis about 6 months after I started working. I was working at one store for about a year, then I moved & transferred to another store the next summer & have been working here since. I never told my manager at the first store that I was diagnosed, mainly because I didn't see it as a big deal at the time, because I didn't know anything about it. But I have told my manager at the store I am working at now since I realized how much it actually gets in the way of my job (scheduling limitations, having to call out of work, going home early due to being sick, etc.) Taco bell is a very fast-paced job & requires A LOT of physical exertion, which can be very hard for me. There have been times when I've come home & couldn't even get out of my car because my knees were so bad. I have never cried at work because of the pain, but I've come pretty close many times. Another thing about t-bell is that since it's a big corporation, it's not very sympathetic to people with these kinds of limitations. That's another reason I never told the first store, because teenagers are so disposable that well, why would they work to accommodate me when there are a hundred other healthy teenagers that want a job? The store I am at now is not working with me either, & that is so frustrating to me. I have told them about my condition a million times, it seems & they just don't care. My hours are crazy: working past midnight on weekends, working 11 hour shifts, working late on weeknights when I have school the next morning. & even though I have asked them to respect the limitations & have written notes to my boss about schedule changes, they are still not respected. I need my job because I have things that I pay for monthly & any other job I would get right now would be the same story, since I am under 18 & I have no college degree, or even a high school diploma right now. I don't know if enough people follow my blog yet to get an answer to this question but I'm just wondering what I should do about all of this. I'm planning on quitting in June once I turn 18, because then the job market will open up a little bit more for me, but what do I do before then?

Check-up

I went to my doctor today & he had some bad news. Ive been taking Plaquenil since I was diagnosed last year & been taking Prednisone for the past couple of months. I admit I'm not very good at taking my pills. But my anti-DNA levels are way high & they're worried there might be something wrong with my kidneys. I've noticed my urine is a little bit foamy too & when I looked that up online it said that could be some damage to the kidneys. My doctor wants to start putting me on CellCept if the next round of blood tests don't look any better than the last. I am scared, my heart is already being affected with the pericarditis. It's a lot for me to take in right now & I dont really know how to feel about it. Am I supposed to be scared or is it nothing? I guess I will find out in a few weeks.

Getting Started

Hello! I'm pretty new to this blogging stuff & I have no idea what I'm doing. But I guess we'll just go ahead & start here. My name is Miranda & I'm 17 years old. I was diagnosed with SLE in January 2013. Along the way I've picked up fibromyalgia & pericarditis. My goal in creating this blog is to find some people that can understand what I'm going through. I don't know anybody else with lupus so I'm in need of some good ole' empathy here. I also just need a place to vent. Hopefully this becomes a positive journey for me :)