Hello everyone, my name is Cherie Jorgensen. I was just diagnosed with lupus almost two weeks ago, but have been living with the symptoms for much longer. I can't tell you how relieved I was to find a "support group" to help me through day to day. While I'm so sorry that anyone else has to deal with this pain, it is comforting at the same time to know that I'm not alone. It's hard to explain to others how I feel, and it's even harder to get through the day trying to pretend like nothing is wrong. Everytime I smile and say that I'm fine my eyes well up with tears. I'm really not fine, I'm in pain, exhausted, and having a hard time dealing mentally with the fact that despite "healthy living" practices, I'm not in control of this. Anyway, it's nice to hear other people rant for a change, as funny as that may sound.
I hope to pull away from this forum how some of you have coped with this disease. I have two kids under 2 that I care for everyday, and a husband who is helpful, but scared he's going to lose me to this... so I try not to discuss how I'm feeling with him because I don't want him to get sad. I intially went to the doctor because of extreme fatigue and a constant headache that was there when I first got up, and would keep me from falling asleep every night. I was (and unfortunately still am), on the verge of tears just doing everyday things, and felt like at any moment I would burst into tears even when I was doing nothing. I did that for a couple months, then the doctor thought I had a sinus infection, so great! Take some pills and get back to my old self! no such luck there, sadly. Then as he was prescribing me sleeping pills in the hopes that a couple nights of good rest would pay off, he mentioned there was a slight chance that it could be an auto-immune issue. I then reminded him that I had rheumatoid arthritis since my son was born (or so I thought it was at the time), and said "isn't that auto-immune." Sure enough, there was more to it. I saw him once after that, then took a bunch of tests for my heart/lungs, and have had to call the office to get the results... some of which I don't even know because I'm too stubborn to call at this point. He wanted me to take the tests and then we'd monitor my symptoms because I'm not too sure that I want to take immuno-suppressors. However, I haven't heard from them again and thus have know idea how I'm supposed to go about anything. I'm just frustrated, and trying to stay positive, but my body is caught in the middle and getting more tired and sick.
Has anyone had any luck treating symptoms naturally? I'm not a big medication fan, and most I can't take while I'm nursing my daughter anyway. Please, if anyone can help I'd love to hear from you. I feel like such a horrible mother most of the time, and I want to have more kids someday but can't imagine adding any more fatigue to what I'm feeling already.... plus, I fear that the aftermath of the next pregnancy will make me worse. Has anyone with lupus had more children without getting a repercussion later?
Sorry to be long winded. There's so much swirling around in my mind.
I love all of you and pray for you. I'm grateful for your willingness to talk about what we have in common, and hope that I can help others the way I know that these posts have given me some insight. Thank you for your support.