My symptoms of of Lupus include various aches and pains throughout my body, severe fatigue, easy bruising, brain fog, (cognitive impairments, such as memory, consentration, and word-association difficulties), headaches, moodiness, and sleeping problems. I often have problems with nervousness and irritability and am unable to sleep. I also have the Lupus Anticoagulant Syndrome, which causes me to bleed under the skin. I feel that I have had satisfactory medical care by well-educated physicians. However, I do not have the family support that I need and desire -- that we all need from our families. I tend to keep things to myself and ignore a lot of what I feel. However, this has only caused me to be depressed. My illness is so misunderstood by my family. I wish they could understand that I am really sick. I need them to be here for me, to support me, and to try to understand how very difficult this illness is.
I feel that I have had satisfactory medical care by well-educated physicians. However, I do not have the family support that I need and desire -- that we all need from our families. I tend to keep things to myself and ignore a lot of what I feel. However, this has only caused me to be depressed. My illness is so misunderstood by my family. I wish they could understand that I am really sick. I need them to be here for me, to support me, and to try to understand how very difficult this illness is.
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I suffer from pain and stiffness in my joints and extremities, severe malaise and fatigue, heart palpitations, and mild hair loss where pain is most prevalent. My skin itches and I have eruptions on my skin which looks like boils; I do not currently have any "malar rash". I experience a lot of stiffness in the mornings, but it continues throughout the day in the areas which are affected the worst. I also experience a great deal of bodily aches and pains, some mild cognitive dysfunctions, and what are called "ocular" migraines. Ocular migraines cause me to have the "aura" pre-cursers, but are not followed by head pain. However, I do have vascular migraines very regularly, which are extremely painful. I have already endured another autoimmune disorder: "Grave's Disease" (dx: 1996 RAI: 1997 as of 1/99-hypothyroid). I'm not sure what to expect. After having pre-lab work for RA/SLE, I was really looking forward to feeling good again. However, my recent blood work (more yet to conduct) strongly indicates Lupus, after ruling our Rheumatoid Arthritis. I have been satisfied with my medical care thus far, but I feel these doctors are well-educated about lupus only to a certain degree. As far as coping with my illnesses, I suppose it's been "mind over matter", mostly. I do believe a positive, realistic attitude is half the battle. I have the support of my family, although I would just like to tell them to "Let me sleep!" I haven't told all of my family yet, about being sick. I don't like to discuss my illness much with others. No one seems to really understand. Gayla, I admire your courage, and hope that I, too, will be able to help others as you are doing now. God bless you!
I have already endured another autoimmune disorder: "Grave's Disease" (dx: 1996 RAI: 1997 as of 1/99-hypothyroid). I'm not sure what to expect. After having pre-lab work for RA/SLE, I was really looking forward to feeling good again. However, my recent blood work (more yet to conduct) strongly indicates Lupus, after ruling our Rheumatoid Arthritis. I have been satisfied with my medical care thus far, but I feel these doctors are well-educated about lupus only to a certain degree.
As far as coping with my illnesses, I suppose it's been "mind over matter", mostly. I do believe a positive, realistic attitude is half the battle. I have the support of my family, although I would just like to tell them to "Let me sleep!" I haven't told all of my family yet, about being sick. I don't like to discuss my illness much with others. No one seems to really understand.
Gayla, I admire your courage, and hope that I, too, will be able to help others as you are doing now. God bless you!
Due to my facial rash, I was diagnosed with Discoid Lupus over nine years ago. However, I've had many, many symptoms over the years that I feel the doctors have ignored, such as the fatigue, dimenishing eye sight, and early menopause symptoms. Recently, I have been experiencing considerable joint and back pain. The accumulating physical problems just seem to be overwhelming. I sleep a lot and seem to get depressed easily. I wish I could find a doctor who knows this disease. I do not feel that I have received satisfactory medical care over the years and the physicians I have consulted certainly are not very well-educated about Systemic and Discoid Lupus. However, I do have tremendous family support and a wonderful husband who takes care of me. Since I am unable to work outside my home, I try to keep busy on my computer most of the time. The important thing is keeping my mind off of myself! I believe the one thing my family doesn't truly understand is that I HURT badly, and at times it is unbearable. I need their help more than they know.
I wish I could find a doctor who knows this disease. I do not feel that I have received satisfactory medical care over the years and the physicians I have consulted certainly are not very well-educated about Systemic and Discoid Lupus. However, I do have tremendous family support and a wonderful husband who takes care of me. Since I am unable to work outside my home, I try to keep busy on my computer most of the time. The important thing is keeping my mind off of myself!
I believe the one thing my family doesn't truly understand is that I HURT badly, and at times it is unbearable. I need their help more than they know.
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