Hi Jynx and welcome! I am sorry to hear you've been having health problems for so long. The best place to start looking is here at Healing well, there is a post called resources. Another good site is www.lupus.org
, those are good places to start. Of course you will learn a lot by hanging out here and getting to know everyone. Lupus is different for everyone but there is bound to be someone here that shares some of your symptoms.
I hope your Rheumy is a good one and that your visit goes well. I know for me it took over a year to dx although I started having symptoms when I was a teen and I've seen 3 rheumy's. Some are not up to date on lupus therefore looks at things a lot differently. You have to remember lupus is hard to dx, it's like a big puzzle the doctor has to piece together over time and if your labs aren't positive it only takes more time, unless you have a great rheumy that knows to look in the gray area too. Make a list of all of your questions and symptoms and talk to your doctor about
each one of them, on a first visit the doc should take a lot of time with you, mine took 1 1/2 hours with me on the first visit and at least an hour each time I see her, which is every 4 months.
Are you on any meds to treat your lupus?
There is a great story out there called the "spoon theory", it really helps family and friends understand what you are going through. www.butyoudontlooksick.com/the_spoon_theory/
Hang in there and don't panic, don't expect the worse wait and see how your appt goes. Feel free to ask more questions. I am sure there will be others along shortly to offer some great advise! Take care
StacieTrust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~ DX: Hashimoto's 1999, Celiac Disease (AKA: gluten sensitivity) 2003, Raynaud's 2004, Lupus 2005 and Sjogrens 2006RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Lortab (as needed), Magnesium Citrate and magic mouthwash (as needed for mouthsores)