It’s especially important to take precautions when you live with an autoimmune disease and must seek constant medical advice from providers and professionals.
1. Know the hospital you will go to for emergencies.
Are they familiar with your autoimmune disease? Do they know your rheumatologist and other specialists you see? Do they have all your medical records on file? Make sure the hospital has this information or at least access to it. Know where you’re going in the event of an emergency before it happens. Have the easiest, shortest traffic route memorized. Know how long it will take you at any time of day to get there, regardless if it’s lunchtime or rush hour.
2. Speak up and ask lots of questions.
If any procedure makes you uncomfortable at any time, whether that’s getting a catheter or a medication you’re not familiar with, tell the medical provider. If they insist on treating you with said procedure, at the very least they owe you an explanation of the pros and cons of what you’re getting.
3. Pay attention to symptoms and keep a journal.
It’s helpful to note anything that feels abnormal to you. If you’ve noticed pain, experienced more flare ups, or find yourself reacting poorly to certain foods, write it down. It’s helpful to have the data readily available when you meet with your providers so you can help them find the root cause.
4. Get the test results before you start any new medications or prescriptions.
Know what you’re dealing with before you accept treatment. Is there a culture present in your urine sample? Do you know for sure that you have a bacterial infection? Follow up and ask for a copy of the lab report.
5. Seek out a second (or third) opinion.
Not sure about someone’s first evaluation of your problem? If it’s not an emergency, find and consult with a new specialist. Consider a second or third opinion. Have a team in place for care that YOU TRUST. I once asked for a second opinion because the advice offered directly conflicted with my rheumatologist’s recommendations for treatment.
6. Research and know the ins and outs of your insurance plan.
This one can probably go without saying, but it is very important. Research what your plan covers before accepting any new procedures, appointments, or treatments. Likewise, you may be surprised to discover you can receive a prescription for massages simply for having musculoskeletal issues.