The physical effects I have from lupus are painful joints, the rash across my nose and cheeks, rashes on my arms and trunk, extreme fatigue, fever, dizziness, and hair loss. The fatigue gets to me the most. Emotionally, I am a wreck. My marriage is affected in so many ways. My husband is tired of hearing about all my problems, so I keep them to myself and feel isolated. This only makes my daily struggles more difficult. At times I feel like I'm the only person on earth who feels this way and that's when I ask, "Why me?" I was diagnosed with lupus seven years ago, but I had suffered with various symptoms over the previous five years. Prior to being diagnosed with SLE, I was treated like a hypochondriac many times. I saw so many different doctors that I finally just gave up because I couldn't afford all the office visits and tests. Eventually, I ended up in a hospital clinic where they repeated the same test at every appointment. I got frustrated again and it was many years before I went back to a doctor. At the time of my diagnosis, I was having rashes, fevers, and had a low white cell count. The medication I was initially prescribed made me very nauseous and I had to stop taking it. At this time, I am not on any kind of therapy for the lupus. Currently, I don't even have a physician, as we just moved to a new area and have NO insurance. Overall, I have been very dissatisfied with the health care I have received and do not believe that the physicians I've consulted have been very well educated on lupus.
I was diagnosed with lupus seven years ago, but I had suffered with various symptoms over the previous five years. Prior to being diagnosed with SLE, I was treated like a hypochondriac many times. I saw so many different doctors that I finally just gave up because I couldn't afford all the office visits and tests. Eventually, I ended up in a hospital clinic where they repeated the same test at every appointment. I got frustrated again and it was many years before I went back to a doctor. At the time of my diagnosis, I was having rashes, fevers, and had a low white cell count. The medication I was initially prescribed made me very nauseous and I had to stop taking it. At this time, I am not on any kind of therapy for the lupus. Currently, I don't even have a physician, as we just moved to a new area and have NO insurance. Overall, I have been very dissatisfied with the health care I have received and do not believe that the physicians I've consulted have been very well educated on lupus.
I really do not have family support, so I deal with my illness by trying not to dwell on being "sick" all the time... Easier said than done. However, I've found that when I think about something that really makes me feel good inside, then I tend to feel better emotionally and have a more positive attitude despite the physical pain. I also believe that praying everyday helps a lot!
I wish my family could understand and believe that I am not faking this. I don't say I'm not feeling well just to get out of doing something I don't want to do. I didn't ask for this nor would I ever. I'm sorry I'm in so much pain all the time, but please be patient with me. When I have the energy, I can do almost anything, but don't expect it from me everyday. I can experience a flare at anytime! ... And I love you all!
Lynn
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