I'm a newbie to the forum . . . spending my Saturday in my usual position: flat on my back on the couch (laptop on my lap, surfing) because I refuse to take it easy the rest of the week, feeling like I have been hit by a bus because I am so tired . . .
I am 40, and my life is generally unspectacular, living the typical American family life with a husband, 2 kids, 2 cats and a dog. My kids both have Autism, making life a little more interesting than it should be some days and my huband and I travel frequently for work - we both work for the same company, an importer of decorative goods.
My road with lupus has been interesting to say the least. It took close to 5 years for a diagnosis. Most doctors saying "you are sick and tired because you are depressed", while I was saying "I am depressed because I am sick and tired"! Endless blood work and tests, with always being told "there is something wrong, but we are not sure what" because my ESR was always elevated, and other things were out of wack. They suggested Lupus, but my ANA came back negative. So, nope, not Lupus. In the mean time, I continued to feel miserable, achey, tired always. As it turns out, I am one of the weirdos that is ANA negative, cytoplasmic staining positive. My previous doctors were only looking at the ANA negative, and (which I did not know at the time) had never pulled a full Lupus panel, only an ANA. All of the other hematologic abnormalities of Lupus are present, just not ANA positive. I have SCLE which seems to be in flare mode more than in remission mode and have had organ involvement and pleurisy as well.
I have chosen to go a different route than most, relying on diet modifications, stress management and rest to alleviate my symptoms and that seems to work most days, although there are days that it is really difficult to do anything but lie around because I am so tired and achey. Fortunately I have a family who understands. My husband is one of the 3 men in the world who are willing to help cook, clean and do laundry. My kids are great too, knowing there are days where mom is just too tired and usually try to do their share as well. My employer is great about it, too - if I am having a bad day (and we all know about those bad days, don't we?), all I need to do is call up and tell her that I need a day off. On incredibly achey days, I have been known to show up for work in my pajamas - nobody cares, everyone knows - plus I can work from home if I need/want to. I am really lucky . . . not everyone has the support system I do. Knowing that it is OK to take a day off if I need it and having the support I do at home has really made it manageable for me.
Anyway . . . that's me . . . love to travel, love to cook, love to read, love to sleep . . . and most days love life.
I look forward to getting to know you all . . .
There are only two ways to live your life.
One is as though nothing is a miracle.
The other is as though everything is a miracle.
Dx: SCLE, Sjogren's, Reynaud's, Peripheral Neuropathy