Well, for me, this has been a decade of constant issues. Big ones. I have minor organ involvement. In fact, only one of my heart valves is affected, and it's basically repaired itself now. No kidney, liver or lung issues. My lupus itself is relatively calm most of the time. I was in a 4 year remission which I unfortunately just came out of. But my flare up wasn't bad.
My big issues are my blood. I have APS in a big way. I'm on blood thinners, so that presents its own issues. If my blood gets too thick, I instantly go into small strokes, or TIA's (trans ischemic attacks). They're serious and not to be taken lightly. So I'm constantly checking my blood to make sure I"m "theraputic".
I have Raynaud's and Sjogren's. Both are mild. I've never had an issue with either of them. I don't even really notice the sjogren's at all, ever! The raynaud's I notice in the winter, but it's not bad.
I don't have joint pain. But I do have fibromyalgia, which at times, can be brutal. That's the only pain I get. All the other "things" you see in my signature line don't present huge problems for me. They're just there! My medication regime works amazingly well for me. The prednisone and Imuran have saved my life.
It took me a decade to get a diagnosis. Looking back, I can remember starting to have problems in highschool. The first being fatigue, and a very powerful sensitivity to the fluorescent lighting in the classrooms. Then my period became the big problem, and things very slowly progressed from there. about 3 years before my diagnosis is when all the crap hit the fan. My doctors still didn't put two and two together though. It was so frustrating. They thought it was "all in my head". I hate that. Way too much of that happens with doctors and this disease.
What finally put me in the hospital in 2000, was a severe case (4 days long, non stop) of pleurisy. I truly thought I was dying, and I had no idea what the problem was. I was also having a lot of heart palpitations. Big ones. So into the hospital I went, and 5 days later, probably 100 viles of blood, I had my diagnosis. I was 26. I had a stroke in 2002 due to the APS. That left me with simple partial seizures. Just this past June, I had a very serious allergy to a new seizure medication. I had a fever of 105 and a rash inside my body that attacked my throat, stomach, intestines, bowels, liver. I was a disaster. I was told I was lucky to not have slipped into a coma from the fever. It was very serious. I'm still recovering from it. Almost there! Miraculously, I haven't had a single seizure since that happened. I was having 4 or 5 a day before that! Divine healing!! Like the reset button had been pushed! 2 months after the allergy is when my lupus came back into play. But I'm doing well controlling it.
So much has happened to me since then, that I have trouble remembering all the crisis's I've been through. I also didn't give myself a chance to grieve properly. Which is what I'm dealing with now. I'm finally opening myself up to grieve what I'm going through, and what I've been through. It's hard. Really hard. Dealing with the incredible loss of my old self. Grieving what I can't do, and what I won't have.
Like you said, it's an unpredictable disease. You can be well and in remission one day, and the next, you're in a hospital bed. It's tragic. I do my best to live each day in a positive mind frame, and to dream and have goals. It's the best way to get through the hard days. And I have a lot of hard days. Even when I'm feeling "good", I can still feel my body battling something deep inside. It's weird. Can't really describe it any other way but that. It feels like I have a war going on deep inside my body, all the time.
I pray that your diagnosis comes very soon. There's nothing worse than living with the unknown. Yes, hurry up and wait. That should be the lupus slogan! Hehehe.... How are you doing taking care of your girls? Are you finding it increasingly difficult to find the energy? How is your support network? Do you have friends and family to help you out? Please let us know what the DNA test shows okay. And also, when you see your rheumy. If you ever need or want to talk away from the forum, just click on my name and my email address is there. It's nice to talk to someone your age about all this!
Have a restful night, talk to you soon!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13
33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus