I have learned so much since becoming a lupus patient. I can now hold my own with almost any physician. I now speak medicalese. I know about tests, procedures, medications, therapies, and so much more. If I had only known then what I know now.
The following five things would have helped me so much if I had known them at the beginning of this journey.
- Find a physician you can work with. Mutual respect in this relationship is important. Your physician will be your partner in this journey. He/she will guide you, advise you, answer your questions, and perhaps even hold your hand. Other than your family, this is the most important person on your team.
- From DAY 1, keep your own set of medical records. I can’t say this enough. Gathering this information after the fact is difficult if not completely impossible. Physicians close their practices. Records get lost. Errors happen. Each time you see a physician ask for a copy of the record from that visit including the physician’s notes. Don’t forget the notes. They are as important as everything else in the records. I have used my records to show an ER physician that I had recently had a heart cath including the results, saving me a needless test and expense. Score one for the patient.
- Know your medications. Know the names. Know the doses. Know the manufacturers. Write it down. You will repeatedly be asked for this information. Being able to provide it can save time, expense, and frustration. Also, you may have problems with a medication by one manufacturer but can take the same medication produced by a different manufacturer. It may not be the active ingredient but rather the binding agents that cause problems for you.
- Keep a diary of what happens in your life. If you add a new medication, write down the date it was added. If you change something in your life, write it down. Allergies occur without warning and knowing what is new or different in your life may help determine what’s behind it. If sleep patterns change, write it down. When trying to determine whether or not it’s important to write it down, err on the side of recording it. Things you may think of as unimportant might be the clue your physician or the ER needs to help you. You never know what small change will make a difference.
- Find a good support group. One that is honest and has a policy where all attendees have the opportunity to share. Your physician can educate you about the medical aspects of lupus, but if you want to know how to live with the disease, ask someone who has been doing it for a long time. They can tell you the products that work, how to clean your house, balance your life, even how to say no. They are an invaluable source of information that comes only from those living with lupus.
From the life of Wanda M. Argersinger
© 2015 All Rights Reserved
Wanda M. Argersinger was diagnosed with lupus in 1992. She became the Executive Director of The Lupus Support Network, Inc., in 2003 when lupus forced her to leave her career as a network engineer. She has been writing since the age of 6, currently writing two blogs about lupus, and one blog dedicated to life and the humorous things that happen to all of us.
Wanda M. Argersinger, Executive Director
The Lupus Support Network
PO Box 17841
Pensacola FL 32522-7841
850.478.8107 or 800.458.8211