Just catching up on all the replies you got here. Everyone has great advice for you, and I'm glad you're seeing someone soon. You MUST talk to them about those blood clots. Make sure you get tested for APS (antiphospholipid syndrome). I didn't know I had it, and boom, I was 28 and in the hospital with a stroke. Very serious and very treatable.
When you're trying to describe the "tickle in your lungs" to your doctor, you are doing the right thing! Explain it the best you can. That's all you can do! A good rheumatologist or any doctor for that matter, will know what you're trying to say. Just keep that list of symptoms going and take pictures of any rashes that might pop up. You'll get through this and onto getting well. It does take time though. Not a quick fix for lupus. Getting others to understand what you have and what you experience day to day is almost impossible. Even with the best support from friends and family, doctors, they just don't get it, and never will. You only get it if you have to live with lupus. That's what we're here for. You can lean on us for support and we WILL get it. The "Spoon theory" is a wonderful piece. I saw Gidget put the link on her reply to you. Print it out and give it to everyone. I have to remind my hubby about the spoon theory from time to time. All I have to do is mention it and then he gets it! Hehe...
You're doing great Tasha.
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