I think im kinda in denial too even after 3 yrs. I push myself to the limit then pay for it...like you Mari I need to give myself permission to rest and relax and not feel guilty about it...even though I still do! im still in denial about needing to take ALL the meds the doc prescribed..i get on a kick where I take them regularly then get pissed off b/c im 31 yrs old and am taking a handful of meds twice a day JUST TO MAINTAIN! and I still feel like crap half the time...grr so aggravating...I know im not the only one on here having these feelings and thanks for letting me rant and rave...nice to have people that understand..no one really does unless they have the symptoms...
much love to all my lupie buds
I am the same way as you are. I do not give myself permission to rest. I have 2 children and I am a stay-at-home mom. I also home school my oldest. Thankfully, he is old enough to do most of the work alone, but I still feel the responsibility to look after all he does. My other is 4 and stays very busy. I also push myself to the max and suffer to extreme's. I am in a flare now and about 2 weeks ago was in docs office for heart and lungs. Inflamed to the point all my organs are being affected. With the meds, starting to feel a little better, but still hurt badly. I can also relate to having to take all the meds just to get through a day.
Thanks for sharing and hope you get relief soon.
I am confused.... I thought flare is when your anti DNA antibody comes out positive which means your innards are under attack... Whatever it is (eg 20 yrs ago was my kidneys, now is my cns). Partial remission is when you are still on your meds but no ant DNA present and full remission is no meds, no symptoms, no anti DNA positive result.
However, even when the anti DNA was not positive, I have always had symptoms of some kind and even joint pain, ankle pain, fatigue, .... Etc. except during that time I always had excuses (should not have ate that last night, bad shoes, etc). I realize now that is called denial !!!!
After 20 years I think I may finally not be in denial!!!!
Can someone clarify the flare question?
my understanding ....... a flare is any time your lupus is more active than normal.
Steve is exactly right. Our meds can and will alter blood results. Add to that there there is no test for Lupus for a reason. Anytime your disease is more active than usual it is considered flaring when seen in the blood work or not. Too many Drs don't even understand Lupus enough to understand that bloodwork does not tell all. It is why it is so I portent (and hard) to find good ones)
I'm 31, a mom of an 11 year old, a 45-60 hr a week business professional, leader of a Lupus Meetup Group and I never want to admit that I'm sick. Every time my symptoms subside I go full speed ahead with work and commitments. Then the second a flare starts to creep in I get so pissed off at my body and at life for dealing me this crappy hand I want to scream! I'm right there with you girl. Forget the bloodwork. I've had really bad bloodwork and felt fairly okay, and then I've had perfect bloodwork and felt like I was going to die. All I can say is, the bloodwork and our symptoms do not always align, and the pain and inflammation we experience is hard to measure in real-time. Hang in there and just know you're not alone. X