I KNEW something was wrong 8 years ago when I developed a Malar rash, chronic fatigue, sleeping problems, joint pain and swelling, and chest pain. My doctor said the rash was some type of skin "condition", but he couldn't expalin why I was tired all the time or why my knees were swelling. I continued to consult different physicians and was told I had all sorts of STUFF. One decided I was going through early menopause and said he would refer me to someone else. He asked me to "take a test", which turned out to be a written questionnaire for depression. When I passed it, he then asked if I'd taken the test before. I answered, "No, the nurse gave me the answers in the bathroom." He was scribbling away on his clipboard as I spoke, probably something like, "BITHCHY FEMALE". He had scheduled a return appointment for me but as soon as I got home, I called his office and cancelled. By this time, I had researched my symptoms on the Net and felt certain I had lupus. However, my test results were normal. I then consulted another doctor for the rash on my face. His first question was, "Have you seen anyone else about the rash?" I said, "Yes, I supposedly have *Rosacea." He said, "That's not it. You have some type of systemic problem." *(Rosacea is a persistent skin disorder that produces redness, tiny pimples, and broken blood vessels, usually on the central area of the face. The cause is unknown, but is common in those with autoimmune disorders and alcoholics.) From there, I was refered to a specialist who decided I had a chronic *Parvovirus ~ another mis-diagnosis.(* Erythema Infectiosum, commonly known as "Fifth Disease"; usually occurs in early childhood or adolescence; one of the many conditions which produces symptoms common in lupus). I finally went to a teaching hospital, which is an hour's drive away from my home, where it was decided that I did have lupus. I was given medications, but the side effects were worse than my lupus symptoms. At this time, I have no organ involvement, so I'm only taking herbs. Needless to say, I have not been satisfied with the medical care I have received and obviously most of the physicians I have seen aren't very well educated about Lupus. I'm a single mom with two little boys to raise (and an abusive separated husband). I'm trying to juggle teaching and writing, and I'm just about worn down at this point. I wish so badly to wake up one morning and be NORMAL again. I haven't even told anyone I have lupus. Everyone thinks I simply get sunburns at odd times of the year. No one seems to know what lupus is, and they don't understand how I can be fine one day and not the next. So it's simply easier to pretend nothing is wrong. I keep going and ACT fine, then collapse when I get home. I just want it to go away, but I guess that's not going to happen. I need to work on accepting the fact that I have lupus and knowing what my limits are... That's hard. I've always been driven. Now, this is driving me nuts. I realize that I am very angry about having lupus. I try to ignore it, but I know this only makes it worse. I push myself in spite of the pain and fatigue, supressing the anger, and then get sick enough to end up in bed for a few days. As I said, I am raising two young boys alone and I have no support from from their father. I moved to be close to my parents and they are a tremendous support to me and my children. But it's hard for them to remember that lupus "never" goes away. So when I am feeing better, or when I "look" all right, it's easy for them to forget that I'm still sick and I still have to take the same precautions. I wish my family could understand that I can't do all they expect me to anymore. I can't do all that I expect of myself anymore, either. I'm not the same person I once was, and it doesn't look I ever will be again.
By this time, I had researched my symptoms on the Net and felt certain I had lupus. However, my test results were normal. I then consulted another doctor for the rash on my face. His first question was, "Have you seen anyone else about the rash?" I said, "Yes, I supposedly have *Rosacea." He said, "That's not it. You have some type of systemic problem." *(Rosacea is a persistent skin disorder that produces redness, tiny pimples, and broken blood vessels, usually on the central area of the face. The cause is unknown, but is common in those with autoimmune disorders and alcoholics.)
From there, I was refered to a specialist who decided I had a chronic *Parvovirus ~ another mis-diagnosis.(* Erythema Infectiosum, commonly known as "Fifth Disease"; usually occurs in early childhood or adolescence; one of the many conditions which produces symptoms common in lupus). I finally went to a teaching hospital, which is an hour's drive away from my home, where it was decided that I did have lupus. I was given medications, but the side effects were worse than my lupus symptoms. At this time, I have no organ involvement, so I'm only taking herbs. Needless to say, I have not been satisfied with the medical care I have received and obviously most of the physicians I have seen aren't very well educated about Lupus.
I'm a single mom with two little boys to raise (and an abusive separated husband). I'm trying to juggle teaching and writing, and I'm just about worn down at this point. I wish so badly to wake up one morning and be NORMAL again. I haven't even told anyone I have lupus. Everyone thinks I simply get sunburns at odd times of the year. No one seems to know what lupus is, and they don't understand how I can be fine one day and not the next. So it's simply easier to pretend nothing is wrong. I keep going and ACT fine, then collapse when I get home. I just want it to go away, but I guess that's not going to happen. I need to work on accepting the fact that I have lupus and knowing what my limits are... That's hard. I've always been driven. Now, this is driving me nuts.
I realize that I am very angry about having lupus. I try to ignore it, but I know this only makes it worse. I push myself in spite of the pain and fatigue, supressing the anger, and then get sick enough to end up in bed for a few days. As I said, I am raising two young boys alone and I have no support from from their father. I moved to be close to my parents and they are a tremendous support to me and my children. But it's hard for them to remember that lupus "never" goes away. So when I am feeing better, or when I "look" all right, it's easy for them to forget that I'm still sick and I still have to take the same precautions. I wish my family could understand that I can't do all they expect me to anymore. I can't do all that I expect of myself anymore, either. I'm not the same person I once was, and it doesn't look I ever will be again.
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