About Lupus

Lupus Coping Corner

A Year’s Worth of Health

Jessica Rowshandel, M.S.W.
Amy Caron
Project Director
Lupus Research Institute

To help people with lupus keep track of your health, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has developed A Year of Health Planners, available for free.  Not only is this tracker intended to help people with muscular, bone, joint, and skin diseases, but it is part of NIAMS’ National Multicultural Outreach Initiative, which understands that these diseases disproportionately affect people of color, including access to healthcare information in multicultural communities. The planners are tailored for different communities of color and with culturally appropriate messages and healthcare information for each community: African Americans, American Indians/Alaska Natives/Native Hawaiians, Asian Americans/Pacific Islanders, and Hispanics/Latinos (bilingual).

Help Your Memory
Your planner makes it easy to organize, storing the day-to-day information about how lupus impacts in one place. The planner is designed to help with “remembering,” which is particularly helpful if you struggle with lupus fog. NIAMS suggests using the planner to track:

  • daily use of medicines and supplements
  • daily tracking of any new pain or health problems
  • questions for your doctor

The planners also come with stickers to remind you of upcoming appointments and blood tests, as well as when to take your medication and which medications you have already taken. NIAMS also suggests bringing your planner to doctors’ appointments to be able to share the important information you have logged.


Planners Passed Lupus LA Pilot Test

Lupus LA, the West Coast Division of the S.L.E. Lupus Foundation, was one of four organizations selected to pilot test the dissemination of the health planners and now the planners are available through NIAMS for individuals or organizations to order. The results from the pilot tests were quite positive! So we hope that you find them helpful, too! 

Order Your Planner
To place an order for free A Year of Health Planners, call the NIAMS toll free at 877–226–4267 (TTY: 301–565–2966) or email at NIAMSinfo@mail.nih.gov. Orders are limited to addresses in the United States and its territories. You can access information on other topics by visiting http://www.niams.nih.gov/multicultural, or by calling the NIAMS toll-free number at 877–226–4267 (TTY: 301–565–2966). They are waiting to hear from you!

Visit our website for other simple suggestions, print brochures, catch up on our past webinars to learn more about lupus and share the information on your social media pages.

Update: We are no longer accepting comments on our site, but please share your thoughts on our Facebook page.

 

Lupus Coping Corner

Disclaimer: The information provided by the S.L.E Lupus Foundation is for educational purposes only and should not be used for diagnosing or treating a medical or mental illness, nor be a substitute for professional care. Consult your healthcare provider if you have or suspect you may have a medical or mental health problem.

Amy Caron, MPH is a lupus patient and Project Director of the Lupus Research Institute provider education initiative.  She is not a physician or counselor.  The suggestions shared in this column are strictly opinions from the perspective of a lay person with lupus. Lupus is a very individualized illness; consult a healthcare professional before making any decisions about your care.

The S.L.E. Lupus Foundation does not provide any direct medical or psychological services nor recommend or endorse any particular treatment or therapy. The S.L.E. Lupus Foundation employees, consultants, and agents shall not be liable for any claims or damages, and expressly disclaim all liability of any nature for any action or non-action taken as a result of the information generated by the S.L.E. Lupus Foundation programs and its website, as well as the S.L.E. Lupus Foundation Facebook and Twitter pages.