I've had skin rashes, lupus nephritis, (inflammation of the kidney) and was suspected of having an attack of Central Nervous System Lupus (CNS) in 1976. I spent 18 weeks in the hospital the first time getting my kidneys working again. The second major bout was a 16 week hospital stay, including one week in intensive care while in a coma. I survived using the same attitude you (Gayla) adopted. I am fortunate in that I had a good doctor early on who was well-educated in dealing with SLE. I have also had the support of my family, which is a tremendous blessing. I've been on Prednisone for over 20 years, and dosages have varied from as high as 250 mg iv to 5 mg (my present dose) orally. I have been in remission (drug-induced) for many years, but always in the back of my mind, I worry of the day it will return. I try to live life as if lupus didn't exist. While under treatment, I did a lot of travel, rode motorcycles (my doctor said I was nuts), got into computers, and for my own self worth, re-entered the workforce after four years of disability. I'm fortunate to be in remission, so these things are possible. After "dying" while in the hospital, I knew that I wasn't going to fear death, I was going to live life. My life is not perfect, and occasionally I'm snapped back to reality as I am reminded that Lupus is a killer. I know that someday it will return to take me. I try to be forgiving of others, to get along with all, even when I don't necessarily agree with them, and I try to be a good person.
I try to live life as if lupus didn't exist. While under treatment, I did a lot of travel, rode motorcycles (my doctor said I was nuts), got into computers, and for my own self worth, re-entered the workforce after four years of disability. I'm fortunate to be in remission, so these things are possible.
After "dying" while in the hospital, I knew that I wasn't going to fear death, I was going to live life. My life is not perfect, and occasionally I'm snapped back to reality as I am reminded that Lupus is a killer. I know that someday it will return to take me. I try to be forgiving of others, to get along with all, even when I don't necessarily agree with them, and I try to be a good person.
If anyone would like to ask any question of my experience, and especially is you know of a man who has been recently diagnosed with Lupus, please e-mail me. I would like to be of help and there are so few males with this disease that is difficult for a man newly diagnosed to find support.
E-mail Alan Here.
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