Building a Care Team
Scheduling doctor visits, being on top of prescriptions, understanding symptoms, getting enough sleep, setting the right diet, managing stress, so on, and so forth. It can be too much for one person to be on top of all aspects of their care, especially as they deal with a long-term chronic disease like lupus. Building a care team will help you take charge. Ultimately you are the only one who knows what's best for you, and being in charge will allow you to care for yourself as best as possible.
The care team
Most lupus cases involve more than one specialist. For example, in my case of lupus nephritis, I have to manage rheumatism and kidney disease at the same time. Going to regular specialty visits can be time-consuming, costly, exhausting, and confusing. Now consider having to do this for more than one doctor and multiple times a year.
Throughout the years, I have found that the most straightforward way to care for myself is to pick a health system that provides various aspects of care under the same roof. Once I established a relationship with my primary rheumatologist, I requested him to refer me to a nephrologist with whom he works closely. The triangle of the two specialists and me created a collaborative dynamic of care. This collaboration over the years has provided me with effective care management where the two doctors in charge are in direct communication.
When healthcare professionals collaborate, it saves the patient from extra homework, confusion, and misunderstandings that lead to mismanagement of the disease. Ultimately this provides a better standard of care. If you are a lupus patient with multi-specialist needs, consider taking charge, and request collaborative specialty care from your healthcare providers.
Having a disease that involves various long-term medications makes the pharmacist an essential part of your care team. The pharmacist answers your concerns and questions about prescriptions. She/He verifies any drug interactions between your lupus medications and other drugs so it is important to reach out to the pharmacist when your medicine changes. With their help, you can also set up regular refills or home deliveries to make sure you never miss a dose.
Family and friends who are on the front lines with you. Whoever your caregivers are, it is crucial to keep them in the loop. Caregivers need to know the latest and greatest aspects of your disease and should be your emergency contacts. Not only you need to know how to reach out and ask for help, but also others around you need to know whom to contact when they need to find help for you.
Take charge and follow your treatment plan
Whoever your care team is, it is important to know how to reach them and who to count on. Once there is a team in place, it is a lot easier to manage your care and follow your treatment plan. Because ultimately, the less you have to worry about your care, the better care you are giving yourself.
How much has the financial burden of lupus negatively impacted your life?