What can I do to take charge of my health?
There’s a lot you can do to learn how to manage vasculitis and take charge of your own health care. You may wish to consider starting with these steps:
- Work with your doctors and family to develop a treatment plan for managing your symptoms.
- Make sure your team collaborate with each other, so they are aware of what is going on.
- Talk to your doctors and ask them any questions you have about your health
- If you are in the hospital, do not be afraid to tell the nurses and other hospital staff what you need. They are there to help make you as comfortable as possible.
- Use a journal, apps or binder to keep track of your medicines and any side effects you notice, as well as other health information. You can download some sheets for your binder on our WORKSHEET page
- Pay attention to how you feel and share what you notice with your doctors. For example, if you have bruises or other skin problems take picture to show your doctor. If you are experiencing pain, low energy, or poor appetite. It is important for your health care team to know how you are doing or how your body is responding to your treatment.
- Share any concerns you have about your treatment with your doctors
- Keep a calendar or app to record appointments and reminders
- Stay connected with your friends and family, and build a support system
- Stay informed about your type of vasculitis
- Manage your energy well. The spoon theory is a great way to manage your energy.
- learn to advocate for yourself
You may need to make some changes in your life because of vasculitis. But with the help of your family and treatment team, you can learn to live with your symptoms — and keep doing many of the things you want and like to do.
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Questions to ask the health care team
When you meet with your rheumatologist or other specialist for the first time, consider asking the questions below. You might want to write down the answers. You can also take someone with you to help you take notes.
Questions about vasculitis
- What kind of vasculitis do I have?
- Do I need more tests?
- What organs are impacted by my type of vasculitis?
- How do I find out more about it?
- Do you have any information I can have?
- Will I need to see other specialists?
Questions about treatment
- What are my treatment options?
- What treatment plan do you recommend, and why?
- What are the possible side effects of treatment? What should I expect?
- Are there possible research I can look into?