iguy,
I can only tell you how my sle has been with me. I was dx when I was 22 years old and for the most part started with being in the sun and the rash. I was only taking plaquenil and doing the labs twice a year. It went on like this for a few years and then I lost my health care coverage for 2 or 3 years. I was unable to get meds or see the doctor. I finally got back on health coverage again started my meds and treatment again. I did notice a difference that it had gotten worse.
While I was off health care I developed more problems like sleep apnea, ra, bone spurs in my knees, and fatigue has increased a lot. I did go back on the plaquenil and was told that I had sle what did I think was going to happen. Then yet again I lost my health coverage again. I was off all meds and care again this time for 18 months. I figured out a way to see my doctors and get my meds that I need finally.
Why do I tell you all this? I believe the ups and downs of treatment than no treatment had a big roll in my sle getting worse. I went from feeling pretty normal to working less hours and extreme fatigue. I have joint pain most of the time and swelling of the hands, feet, and lower legs everyday. I don't want you be worried as most that don't do the roller coaster care do just fine but can advance some with the sle. Just follow her lead and let her set the pace for the day.
I really don't mean to scare you so if I did I am really sorry but again want to say that my advancement had to be from the lack of treatment for the few years. I don't believe that there is a thing called mild lupus of any kind but that is what I think. To me it is like saying someone has mild cancer. Lupus is a very big struggle everyday to keep thing level and not over do things. I am glad that things are going well for both of you. I find it promising that a loved one is looking for answers for someone with lupus, in the hopes of understanding what is going on with their loved one. I did want to say from a personal experience that it is hard at least for me to share with others that don't have lupus just how bad things are as so many people think we are just lazy, because we look ok.
I can only tell you how my sle has been with me. I was dx when I was 22 years old and for the most part started with being in the sun and the rash. I was only taking plaquenil and doing the labs twice a year. It went on like this for a few years and then I lost my health care coverage for 2 or 3 years. I was unable to get meds or see the doctor. I finally got back on health coverage again started my meds and treatment again. I did notice a difference that it had gotten worse.
While I was off health care I developed more problems like sleep apnea, ra, bone spurs in my knees, and fatigue has increased a lot. I did go back on the plaquenil and was told that I had sle what did I think was going to happen. Then yet again I lost my health coverage again. I was off all meds and care again this time for 18 months. I figured out a way to see my doctors and get my meds that I need finally.
Why do I tell you all this? I believe the ups and downs of treatment than no treatment had a big roll in my sle getting worse. I went from feeling pretty normal to working less hours and extreme fatigue. I have joint pain most of the time and swelling of the hands, feet, and lower legs everyday. I don't want you be worried as most that don't do the roller coaster care do just fine but can advance some with the sle. Just follow her lead and let her set the pace for the day.
I really don't mean to scare you so if I did I am really sorry but again want to say that my advancement had to be from the lack of treatment for the few years. I don't believe that there is a thing called mild lupus of any kind but that is what I think. To me it is like saying someone has mild cancer. Lupus is a very big struggle everyday to keep thing level and not over do things. I am glad that things are going well for both of you. I find it promising that a loved one is looking for answers for someone with lupus, in the hopes of understanding what is going on with their loved one. I did want to say from a personal experience that it is hard at least for me to share with others that don't have lupus just how bad things are as so many people think we are just lazy, because we look ok.
