I just joined the forum because I am having trouble dealing with the news I received yesterday and need help with it.
I was diagnosed with SLE in 1992 at the age of 12. I was treated with Plaquenil and Prednisone for the next 5 years and went into remission at the age of 17, and have been that way ever since. I hadn't seen a rheumatologist since 1997, SLE had become a vague memory and part of my past. When I got pregnant 2 years ago I filled out the medical questionnaire and answered yes to SLE, I always have. Of course the OB/GYN made me see a rheumatologist, I wasn't sick, it couldn't hurt, it was just another office visit, added to the several other office visits.
As I expected it went well, I had no symptoms, my blood work was excellent, ANA titers were so low I could have even be just a healthy women with false positives.
I was excited, I had avoided the rheumatologist for all these years for no reason, had I just gone they would of surely confirmed what I was now thinking was the case, I didn't have Lupus, I had never had Lupus, and it had just been teenage hormones and a wrong diagnosis. I was on cloud nine.
I guess its never easy to be told you have SLE but in my head for a 12 year old, it was even harder, teachers don't understand that your sick, even when its a struggle to get out of bed in the morning or right your name on a test paper, because you look healthy, except for some weird rash on your face. Other 12 year olds understand it even less, they just know that you get to come to school when you want and take your test at your own leisure. Your track coach can only be so supportive of you not being able to make practice before its unfair to the other girls to keep you on the team, your friends don't understand why you stay at home so much, and make fun of your baby sunblock when you go outside.
I hated being sick, to the point I was on several antidepressants most of the time and even attempted suicide, lupus was the bane of my existence and I wanted to keep it wear it belonged, in my past, so when I got those results back, my C4 was normal , inflammation markers normal, and ANA titers so low that I convinced myself for a second that it had all been a bad dream and I was free & clear.
I continued to see the rheumatologist throughout the pregnancy for precautionary measures and every time the blood work looked good. My son was born 12 days late 8lbs 4oz and fit as a fiddle. One month after he was born, I was tired and achy but also a new mom so that was normal, I went back to the rheumatologist for what I thought would be my final check up.
He was concerned, the blood test weren't looking that good but not too concerned b/c it happens sometimes postpartum. He wanted to see me back in 3 months as a follow up. Same thing then I still had no symptoms but the blood work looked even worse, wanted to see me again 3 months later... repeat. About a week or two after my last visit, I started getting achy and tired, I thought it was a virus, I've noticed my vision worsening but read that can happen sometimes after giving birth and I'm not getting any younger so I just figured I needed glasses, I also started getting scatterbrained, forgetting conversations, leaving milk out of the fridge, silly stuff, but also blamed that on motherhood and stress, that was all until yesterday when the rheumatologist said what I dreaded hearing. Your blood work is steadily declining, this is a lupus flare, you are no longer in remission and you have to go on medication.
I know it isn't a death sentence and that I will go back into a remission again, but all those emotions that I had buried for over a decade came rushing back and now I don't know what to do with them. I'm angry, I'm sad, I feel like I am being a baby, I feel like I am a kid again, I'm scared, I am all over the place. I feel like I can't tell anyone. My mom will freak out, my husband has never seen me sick and won't really understand. I don't know what to do.