Seven Ways To Stay Safer With Spondylitis
Sometimes living with spondylitis feels like I'm on a bizarre game show. Where I'm the host and the medical community are contestants. We understand the topics and questions, but the answers aren't satisfying or helpful. But this isn't a game. It's our lives. And we need support to make good choices, especially if we're hurting or scared.
1. Plan to stay in touch
Make sure you have all of your doctor's contact info. This includes the main office line, fax number, after hours, and email. Ask for a copy of the practice's contact policy.
2. Know your stuff
Be prepared to communicate about your spondylitis at scheduled medical appointments, procedures, and in an emergency. Wallet cards, thumb drives, and medical alert jewelry can help you be heard. It's okay to ask for help from friends or family. If you’re awaiting diagnosis, prepare to explain your symptoms, concerns, what you and your doctor have done so far, and how your health is being managed.
3. Keep good records
Maintain a complete list of everything you take for your health, pain management, or insomnia. This includes prescriptions, over-the-counter medications, supplements, essential oils, eye drops, and topical medications. Don't forget energy drinks or any stimulants that you use for fatigue or pain.
4. Get support
Learn about patient your manufacturer's assistance program and helpline. Assistance programs are designed to make medications more accessible to patients facing issues with cost and insurance coverage. Some might help manage prior authorization. Helplines offer you reliable information about the safe storage and use of your medication. They might suggest steps to take with vaccination, travel to tropical destinations, foods and drinks to avoid, managing surgeries, dental work, and other medical procedures. They may advise patients how about fevers, rashes, injection site reactions, and common illnesses like the flu.
5. Find your pharmacy
Your health depends upon understanding your medication's dosages, scheduling, side effects, and potential drug interactions. A pharmacy is uniquely suited to address these needs. It's worth consulting a pharmacist about over the counter remedies for cold and flu, allergies, sinus issues, insomnia, and digestive distress. Your pharmacist will be able to help suggest substitutions or other changes as needed. Pharmacists are a specialized medical resource, don't miss out.
6. Respect acetaminophen
Always know how much acetaminophen you’re taking and stay within the safe zone. The FDA revised its guidelines around the use of acetaminophen when it became clear that even small dosing errors can cause liver injury, and that taking more than needed does not have any additional clinical benefits. Acetaminophen is used alone for fever and pain, but it’s also found in compound drugs used for headache, cold and sinus, flu, hangover, and digestive ailments.
Please click here to learn more about safely using acetaminophen.
7. Speak up!
It's your right to object, ask clarifying questions, or change your mind about anything to do with your health. These talking points might help if something about your treatments, clinician, or the setting makes you uncomfortable:
- “This makes me uncomfortable.”
- “I don’t understand what’s happening?”
- “What are you doing and why are you doing it?”
- “I’d like to see the Charge Nurse right now.”
Do you use the word disability to describe your AS?