As my hearing approaches (60 days!), I was told to start writing down things that I go through on a daily basis; pains, problems, etc.
So, I guess I'll start with how I figured out I had lupus. In 2004, I was having severe fatigue, followed by severe pain in my knees, especially with stairs. Lupus runs in the family, so we had an ANA test done, and it came back positive. Now I know that doesn't always mean anything, because I've also had negative ANA's, usually in times when my lupus is being calm. It seems directly related to my stress levels and/or other symptoms and flare ups. Of course there was also the butterfly rash on my face as a dead give away. I did physical therapy for my knees, and it did help for a while.
High school was a series of good/bad cycles. I was very active in the music community, partly because I'm not that coordinated, and partly because I couldn't keep up with the physical demands. Not that marching band wasn't physically demanding. There were times when it was really hard. But mostly I was having a hard time with my immune system, almost constantly sick, and the fatigue made it hard to get out of bed sometimes, and impossible most times. My school record was pretty awful, usually missing more days/classes than I attended. Over all, most of my teachers were understanding, or tried to be. One of the worst things that happened in high school was in 2006, my hip started hurting out of the blue, and I left school early because it was so hard to walk to the classes. At the doctors, they ended up giving me an injection in my left hip, which temporarily helped. It stayed a dull but persistent pain for quite some time after. My hips have always been one of the most painful things joint wise (pretty equal to my knees). In my senior year, although at the time I never put two and two together, my left shoulder (yeah its weird, but a lot of my problems come on my left side) started hurting so bad I couldn't participate in band anymore (for a few weeks, but intermittently after that it hurt). Academically, I was smart. Not top 10 smart, but top 25% smart. I bet if I could have been more persistent I could have done better. I almost failed because of my inability to be in gym class of all things. Many essays on useless things later, I was allowed to graduate, with regents honors, and a fine arts diploma.
Then came the ever important college. Which I've already written a little about. I did my classes online so that I was not exposed to excess germs, and so that when I was having a bad day and couldn't get off the couch, I could stay in bed. It was still hard, and I ended up having to quit with not many classes left. The stress of the classes caused many flare ups, but one in particular made my heart rate very fast, I'm talking over 200 fast. I spent my whole valentines day in the emergency room while they tried to lower my heart rate. By 8pm, they sent me home on some medicine to help keep it down, but it didn't work very well. I haven't returned, and don't know when/if I will yet.
At the time, I had been working as well as doing classes, and that probably was a bad decision, but I was 20, and wanted (still do) to be independent and make something of myself like all my peers have been doing. I had an apartment, a room mate, loving pet fish, and a couple friends who were away at college. I was doing what I thought was what everyone my age was doing. I failed to remember that lupus has limitations. More like I tried to push them, and lupus pushed back. I have tried steroids, plaquenil, and other things like physical therapy to try and control the symptoms.
Shortly after my heart incident, my legs started to swell and bruise, and it was the worst pain I have ever felt in my life. I couldn't walk, or stand, or even touch my legs without being in tears. My doctors tried everything from antibiotics to steroids and potassium supplements to make them better, and in the end, the only thing that helped was strong ibuprofen, and rest. It took 6 weeks total before they were "resolved," as my charts say. But I still have problems with my legs, especially poor circulation, pain when standing, restless legs while sitting, and there are marks left on my legs from the swelling. It was awful. I couldn't even get to the bathroom by myself, I couldn't get dressed by myself because my pants touching my legs was excruciating. It was September, so the warm ish weather helped so I could usually wear shorts and a sweatshirt to keep warm. My boss was not understanding what so ever. Even with a doctors note he continually contacted me to ask when I could return to work. After a couple weeks, he told me that he was going to fire me since I could not work. This was just the icing on the cake in my list of bad things that year. However, my boss learned the store was closing, and decided to "do me a favor" and lay me off so I could collect unemployment. I had no idea that it was going to interfere with my disability case, because my lawyer said it wasn't a problem. But it was.
After my legs, I developed Raynaud's in my fingers and toes especially.
I have never wanted anything more than to be able to do what everyone else my age can do. I cant go out on the weekends, or even go to the movies sometimes. If its not pain in my joints, or fatigue, or being sick, its my depression keeping me home. I have lost so much from having this disease, and some people think im just being lazy and don't want to go get a job. that couldn't be farther from the truth. I had high hopes and aspirations of being a forensic scientist, or a music therapist, neither of which I have been able to accomplish. All my peers have graduated college, are starting families, and dream jobs, and here I am, still fighting to prove that I have this sickness. Is it any wonder my stress levels have been consistent, and lupus flare ups persistent? And that doesn't even include the fact that I also have segmental neurofibromatosis.
I just want to be normal, but I cant.