Hi Michelle, and welcome to the board.
It sounds like you have yourself with a doctor who understands what sle is and how to work with it. There are a few things that those of us who have lived with sle for a long time can suggest to help you make the most out of your dr visits.
Do NOT believe in any literature which gives dire statistics and/or is over 5 years post print date. The reason? Testing and treatment has changed leapyears in the last decade and less, and much of the dire predictions use stats that are out of date and no longer apply.
***I was told back in 1988 by the first rheumy I saw that I would be dead in 5 years. Guess he shot the mark wrong on that one!*** He got fired really fast post that statement.
Do listen to your body and take rests when you need to. If you have a little one with you, time for a book, story, songs, anything that lets you rest. Don't pay attention to well meaning, but wrong, friends and family who urge you to push yourself harder than you can handle that day, hour, moment. Once you have done this for a bit, and get your meds worked out, you most likely will have more energy than you feel today. But, if you don't take care of yourself, you can do damage that may not be able to reverse. So, for now, it is crucial to let yourself have a break.
Do eat a balanced diet, even tho you may not want to eat, you must keep your body fed. Some drugs can slow down your metabolism, so if you are battling weight gain, talk to your doctor about it, and voice your concerns.
Do get an adequate night's rest.
If you are battling painful joints and muscles at night, try what has given me help: I use 4 - 1" foam pads on top of my mattress. Without the support of these, I am so sore and stiff it is insane. Don't hesitate to ask how others have survived similar issues you are facing.
Do not hesitate to ask questions. We are here to help each other. If you are getting more than giving today, then know your turn will come down the road. So, accept that we are here to support each other.
Keep a journal of your symptoms and also evaluate your pain levels on a 1 to 10 scale. Take this to the dr visit with you. It helps both of you identify the broad scope, not just the moment. What to include differs for each of us.
Let yourself and your family grieve that the "old" you is gone. The new model is still learning how to survive this companion that none of us want. The grieving will not happen overnight, but let yourself feel the grief.
If you find yourself in too much depression time, then perhaps it is time to seek a counselor. There is NO shame in seeking help. There is a lot of wisdom in seeking help in surviving a situation no one ever asks for.
Know that there is life in, with, and through lupus. It is a different life, but there is life. It most likely isn't what you planned, but life can be good again. The stages just take time to work through.
Sally
