You Are Not Alone
First and foremost, you are not alone. There are many people living with lupus, and living quite well. There are people to talk to. There are support groups you can attend. There is information available. There are physicians to treat you and help you manage your disease.
Things every new lupus patient should know:
Learn all you can but make sure the information you read is accurate and from a reliable source
Choose your physician (rheumatologist) carefully and wisely. You need to be able to work together as a team.
From day one begin keeping a medical notebook. In this book put copies of all test and procedure results, notes from all of your physicians, lists of all your current medications including the prescribing physician, and your own personal notes about how you feel, the way medications affect you and anything else you believe may be important in your treatment.
Keep an accurate and up to date list of your medications with you at all times. You may even wish to give a second copy to your spouse, your best friend or your travelling companion.
Learn to be vocal and be YOUR OWN patient advocate. No one will speak louder on your behalf.No one knows you better than you do. Be assertive but not aggressive.
It is important to have a health care surrogate – someone who can make medical decisions for you should you be unable to do so. Additionally it is often a good idea to have someone, such as your health care surrogate, attend doctors appointments with you so there are two people hearing the same information.
Lupus is NOT a progressive disease. It is characterized by flares and remissions. Flares are an active disease state and can last from hours to days to weeks to months to years. Remissions are states of disease inactivity and can last just as flares do.
If you want to know how to live well with your disease and learn tricks and tips on how to do things in a different way that may work better for you, talk to other patients. One of the best ways to do this is by attending local support groups.
There will be days you feel good and days you want to stay in bed. Energy becomes a precious commodity – use it wisely. Don’t go overboard on the days you feel well and do too much, you will surely pay for it the following day. Pacing is of utmost importance.
During periods when pain is present, it is not always because of something you did or didn’t do.It is part of the disease.
Though you wish everyone could understand how you feel, that is not possible. Even those who love you most can empathize with you, but they can not completely understand what you are going through. To expect them to is unrealistic.
There may come a time when you, as a lupus patient, may have to quit working and file for disability. This does not mean you are of any less value. It does not mean you deserve less or should be treated in a different manner. If you have to file for disability, understand it can be a lengthy process. Talk to others who may already be on disability. They can provide invaluable guidance.
Everyone, no matter what race or economic status, deserves quality health care. Don’t settle for less than what you deserve.