Hi. I'm Jodi, and I was recently diagnosed with SLE. Suddenly I find myself inundated with doctors appointments, pills, and questions. I am a secretary by day, and a college student by night. ...although I'm having a very difficult time concentrating. I get distracted, by nothing at all. Suddenly I find that I'm not even listening, or I can't retain what I've just read at school. Obviously this isn't reflecting well on my grades, and in the last 2 years I've gone from an "A" student to a "C" student. I don't know if I should address lupus with my teachers at the start of each new semester. So far I am inclined NOT to do so, as I've gotten very mixed reactions from people. At work I keep a list of tasks, and have to check it often, because I forget what I'm doing - or I find myself sitting at my desk doing nothing, when I have many things I should be doing. I don't know how to clear away this fogginess - but if anyone has suggestions, I'd appreciate them. I just turned 30 and I'm not ready yet to have these "senior moments."
I am taking Plaquenil, and Rheumatrex, a multi-vitamin and calcium, and an occasional injection of corizone when the pain in my shoulders gets to be too much. Every 4th week I am due for either bloodwork, or an appointment with my rheumatologist. I need to see the opthomologist every 6 months because of the Plaquenil, and in between these visits I need to squeeze in a GYN appointment and a dentist appointment. My boss is not all that tolerant of my new found need for an hour off here and there.
I live alone, and my mother is now treating me like I'm dying. She calls me at least twice a day to see how I feel. She asks me to move home. She stops by randomly to see me. She panics if she can't reach me on the telephone.
My boyfriend doesn't believe I have lupus. I don't know if he doesn't believe in lupus as a disease, doesn't believe I have it, or doesn't want to believe I have it. It aggitates him when he sees me take medication. He won't talk about it, because he says I don't have it.
For now at least, I am rather resigned to the fact that I have SLE. In April my doctor told me he thought I had Hodgkin's Lymphoma, and removed all the lymph nodes on the left side of my neck. I suppose after thinking I had cancer and was about to begin chemotherapy, I breathed a sigh of relief to learn I had lupus. ...although now that I know a bit more about it, I don't know which is worse.
I went to see my primary care physician last week I had a persistant sore throat, and figured I just needed an anti-biotic or something. There are two doctors in the office, and I think they dread my visits. In the last 2 years I have been there for pneumonia, a rash I get whenever I'm in the sun, the lymph node situation, extreme fatigue, etc. (It was only in the course of the surgery that it ever occured to them to check my anitnuclear antibodies, which lead to my referral to a rheumatologist.) When the nurse called my name last week, I went into the examination room. I sat there for an hour - and then looked out the door to see what number they were up to. (They have a magnet board, so they know which rooms have patients waiting). I was at the top of the list, so I went back into the room. A half hour later, I looked out the door again, and found that they kept bumping my number down. After 2 hours I went out to ask the nurse if someone was coming in to see me and she assured me I was on the list. After 3 hours, and no patients left but me, the doctor finally checked me. I told him my symptoms and he asked me what I wanted him to do, did I want a CAT Scan? I don't know what I want - I just have a sore throat. I just wanted a doctor to look at my throat. Turns out I had strep, but it's awful to be treated like such a burden or a hypochondriac.
I feel like no one understands, so I try to keep it to myself, but I'm getting so sad these days. I feel so alone. I don't feel like me anymore. I don't want to see my friends. They just tease me because I fall asleep during movies, or I want to go home early because I'm always tired. They think I'm bored, or I'm not fun anymore, but really I just want to rest. How did my life become this? I'm too tired to fight all these battles. Is anyone else having a difficult time coping with this? I thought I could handle it.