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Encouraging others coping with lupus: You are not alone
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27th Annual Lupus Loop
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Your local lupus association can help you find or even create a self-help group, or put you in touch with someone to talk with. Gathering and sharing what you learn will help you and those around you to understand how lupus can affect your life, why you feel the way you do, what is happening to you, what treatments are available, what to expect, how symptoms can affect you and how best to deal with them. Your first and best resource should be your doctor. Ideally, you need a physician you can trust, one who is willing to listen and prepared to spend the time needed to answer your questions clearly and respectfully.
It is important that you be able to communicate with your doctor.
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A good doctor is your partner in dealing with lupus, ready to refer a difficult problem to a specialist, and not uncomfortable if you ask for a specialist or a second opinion. If your doctor considers you a partner in your care and informs you fully about any treatment or medication prescribed, it will help you to follow directions and note any unusual reactions. You can make it easier for your doctor if you do your part. Keep a diary or journal of your illness.
Make notes about symptoms right away, as they come up. If you find a way to cope with or to lessen a symptom, write that down too. Record any medication reactions, blood tests, and other ongoing evaluations.
The diary can help your doctor in considering medications, treatments and referrals. It can also help you prepare questions to ask and issues to bring up at your next medical appointment. If you disagree with your doctor about a course of treatment, you or your advocate should make your concerns known and discuss the situation.
There are also a number of other health professionals who may be helpful to you — for example: occupational therapists, physiotherapists, social workers or massage therapists. Your doctor can discuss these alternatives with you and provide you with a referral if needed. For each medication prescribed you need to know: possible side effects, interactions with food and with sunlight, how long it takes to work, how to take it and when, and how long you can expect to be on it.
In addition to your doctor, your pharmacist is qualified to give you information about your prescriptions. If you can, establish a connection with one pharmacist, who will keep track of what you are taking and tell you of possible interactions when something new is prescribed. Doctors know they can forget some of the details, and you are the one most affected by the medications and treatments.
Again, diary entries will help you keep track of any reactions or side effects. Very often, a person with lupus is being seen by several specialists. They should all be aware of any changes. Many hospitals have Patient Advocates, to help patients who have a problem with a health professional, treatments or the surroundings.
If you have any difficulties while in the hospital ask to speak to a Patient Advocate.