I understand. I'm still a bit angry and confused myself but I can say that I do understand what your feeling!
I know the exhaustion, feeling like your not parenting to your liking, shaking, pain, normal tests, breathing problems, prednisone, hairloss...I have been there, am there now and will be again. I am not down-playing how you feel, just letting you know that I truely do know!
For me, I had to find the best Rheumy I could, and I truely do believe that she is the best available to me (She is out of state, two hours away!) and determine that what she said was the end all be all.
Granted, if she said something totally out of whack, I'd have to question the situation.
I had to decide to trust her and believe that she knew what was best for me and do what she says (I still struggle with following all of the instructions/meds/rest).
I wouldn't recommend doing that if your not comfortable with the doctor or if they don't listen. She doesn't always tell me what I want to hear or seem overly consoeling, but at the end of the day she really does know what is best for me.
I did go through quite a few Rheumys. I decided to consult with her and she immediately took me on as a patient. My insurance does not cover her and I have had to have fundraising car washes to continue to see her. It has been worth every penny. Simply because I decided that she knew best.
She is the head of the Lupus Center at Johns Hopkins in Baltimore, MD, Michelle Petri. Johns Hopkins is cutting-edge, up to the minute and has patient from around the world. They are writing the text books and making desease altering discoveries. Can you go there? Even if it were only a consult, she will coorespond with your regular Rheumy and give orders/suggestions...If your Rheumy is willing to communicate and take direction.
I am very fortunate to have been accepted as a patient.
Have you consulted with any research hospitals?
Best of luck and keep me posted,
31 year old mom of 1: SLE, UCTD, FM, Arthritis, Reynalds(?), Migraines, Alopecia, Neuropothy(L:Hand & Foot), Int. Bells Palsey, Costrocondritis(?), a bunch of other stuff I don't remember right now and even more labwork I dont understand! Patient at Johns Hopkins in Baltimore, MD.
Plaquinil, Trazodone, Lidoderm, Percocet for now...I hate taking the meds! Refusing any more Prednisone!