starting to sink in

So, I think the fact that I have lupus is finally starting to sink in. I've started developing symptoms that are starting to bother me more...sure, pain all over all day is no big deal, but now I'm LOSING MY HAIR!! :( And I have a couple small rash spots on my jaw and ears (not to mention the lesions on my leg...), and they bug me too.

I've decided to start a symptoms journal so I can keep track of my symptoms all in one place (so I don't need to make separate posts for the various complaints...complaining is starting to get old....).

I sortof find it weird that these new symptoms bother me more than the old stuff. They are less debilitating than the other painful symptoms. But the hair loss really stinks. I've always disliked my fairly thin hair, and now I have even less of it and it really sucks. It's receding at the hairline and there are almost-bald spots, too. Guess it's time to do some hat shopping :/

I've also started thinking that I might want to find a new doctor (yes, again). This is part of the whole "sinking in" part. I'm realizing that I will be working with my doctor for the rest of my life, and although I do like Dr. A, she's kindof my rebound doctor from Dr. Jerk. I was happy with Dr. A because she was very hopeful and nice, and that was what I really needed after the discouraging start with Dr. Jerk, but Dr. A has some drawbacks. Primarily, she isn't really open to working with alternative or complimentary therapies, and that's very important to me. She doesn't tell me I can't, but I'd like to work with someone who is knowledgeable about them.

I found the name of a rheumy in NJ that is a DO (rather than an MD), and I thought that might be a good start. It turns out that she is not currently practicing, but she did recommend a doctor over in PA. Dr. Susan Ward, a rheumatologist, runs The Consciousness Institute, a rheumatology medical practice. The Institute offers an array of alternative solutions, including meditation, massage, nutrition counseling etc. I'm really excited about this place, it sounds like just what I was looking for, though it is far away (about 2 hours). I am planning to contact them and see what they think. I would be willing to travel that far a few times a year if they would work with me that way. Maybe I could check in more often by email, and have my blood tests done locally...I guess I'll see what they say.