Hi,
Newly diagnosed by primary dr by symptoms and positive ANA (?)
The past four years have been sprinkled with episodes of rash, hives, sudden onset depression, muscle fatigue, fatigue, dizzy spells, and then recently intense pain in feet (specifically balls) , wrists and forearm ( I thought it was carprel tunnel), dry eyes, and brain dog (not remembering my best friends name while talking about her to someone else.)
I used to run trail marathons but the past two years have been hard to do anything over ten miles. Despite all this I am really healthy. I paddle board in the ocean a few days a week, train rescue dogs on weekends, and live a really active life. I am scared that I will lose all of this !
I also don’t know what to expect from my first rheumatologist appt. what I should prepare, what to expect, what to ask, what meds might be talked about.
Don't go in with any expectations. Just relax and answer all questions as best as you can. Prepare a list of all your symptoms and when they started and bring that with you. If you want, prepare some questions in advance of some concerns you might have. He will probably do a full physical exam and several blood tests and an urine test. So make sure you are hydrated. Good luck.
Don't start worrying about your future. If you find in the future you have to give up something then you can find something to replace it. Sorry to tell you this but sooner or later all things change, even if you didn't have lupus. Treat yourself with kindness and keep a positive outlook. On those days you want to yell and scream about how you think it is unfair, we are here for you. Most of us have felt that way too.
I completely understand your fears. I used to be very active myself but have had to find other hobbies. It is hard but it helps to have many various kinds of activities. There will be good and bad days. When you don't feel so well, listen to your body. On good, do what you feel you can.
Hello. Your first visit may be filled with tons of questions and also a lot of blood work. Feel free to ask your rheumatologist any questions that you may have.