786 posts in the category “Conditions”

Ready as you can be? Disaster preparedness when you’re living with a health condition

Posted October 5th, 2017 by

The recent string of tragic natural disasters highlights the importance of planning ahead (as much as possible) for managing your medical needs in the wake of a crisis. So we’ve gathered some expert preparation tips and ideas for what to keep in an emergency supply kit.

All the victims of these disasters are in our thoughts. If you were affected, see a list of U.S. federal resources here, including the national Disaster Distress Helpline — open 24/7 for people experiencing emotional difficulties after any natural or man-made disaster.

Make a plan

“You are in the ideal position to plan for your own safety as you best know your abilities and needs during and after an emergency or disaster,” according to the U.S. Centers for Disease Control and Prevention (CDC). The CDC advises that people with disabilities or special health considerations make plans with the help of family members and/or care partners.

The American Public Health Association (APHA) offers these general tips for getting ready for a disaster:

  • Get informed. Know what kinds of disasters can happen in your community, and familiarize yourself with local warning systems, evacuation routes and shelters. If you will need help in a disaster, contact local emergency officials about any assistance they can provide and whether any local shelters will be equipped to care for evacuees with special medical needs. Also, most shelters don’t allow pets, so plan accordingly.
  • Create an emergency stockpile kit. While different disasters can require different stockpile items, a few basics are needed for any emergency. These include a battery-operated radio, clean water and nonperishable foods, a first-aid kit, a manual can opener, extra batteries, important medications and documents, a flashlight, water-purifying agents, clothing, bedding, copies of important documents and pet food, if needed. Make your kit portable in case of evacuation or make a second stockpile kit that you can easily take with you.
  • Practice and communicate. Include all of your household members in creating an emergency plan and putting together a stockpile kit. Also, practice by doing drills. Designate an emergency meeting point and contact person in case an emergency happens when you are separated. Being involved in the preparedness process is critical for building confidence and can lessen stress and mental health effects.

Make sure you have a supply of your medications on hand by filling your prescriptions at the earliest possible date (and store them according to the instructions). If you have medications that require refrigeration, keep gel ice packs in your emergency supply kit in case of a power outage. Even if you don’t store extra medications right in your supply kit, keep a list of your medications in your kit so that you know what to grab in a hurry.

Consider the specifics

For pointers on preparing for your own specific medical needs and the types of disasters that could possibly affect your region, check out these additional resources:

  • The APHA’s collection of emergency preparation guides for specific types of disasters — from tornadoes and earthquakes to blizzards and wildfires — as well as manmade disasters and health pandemics
  • Alaska’s “Get Ready!” Toolkit and Oregon’s “Ready Now!” Toolkit — thorough disaster prep guides for people with disabilities, including how to pack a supply kit, make an evacuation plan, and prepare pets and service animals for emergencies (note: in the “Ready Now!” document, skip to page 9 for universal tips for people outside of Oregon)
  • Emergency 2.0 Wiki’s accessibility toolkit — a crowd-sourcing site that pools resources (like videos, social media tools and specialized smartphone apps) to make emergency information accessible to everyone, including people with hearing, vision and communication difficulties
  • Smart911 — a free service that the CDC recommends because it allows you to create a private safety profile that instantly transmits information you specify (such as your health conditions and medications) to the 9-1-1 dispatcher’s computer screen when you place an emergency call.

“Being prepared for the unexpected is one of the best ways to lessen the impact of a disaster, both physically and mentally,” the AHA says. “Plus, knowing you’re prepared will help you stay calm and clear-headed in the face of a disaster so you can make safe decisions for you and your loved ones.”

Do you have any additional tips? Join PatientsLikeMe today to share your ideas and talk about topics like this with others in the forum.

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How to be your best health advocate

Posted October 3rd, 2017 by

PatientsLikeMe is pleased to announce a new collaboration with Cathy Chester, a wife, mother, advocate and the voice behind her blog, “An Empowered Spirit: Living a Healthy and Vibrant Life After 50.” You might’ve already seen Cathy’s #MoreThan story about her diagnosis and how she’s much more than MS. Here, Cathy dives into the importance of being your own best health advocate and how you can take charge of your health.

Self-advocacy has become a critical part of the doctor-patient relationship. It’s no longer enough for patients to relate their symptoms to their physicians and accept the response. Patients need to ask questions; they must act like detectives solving a mystery in order to find the answers they’re looking for. If you can’t find the answer you need quickly, you may end up shuttling between specialists and wondering if the professionals will ever figure out what ails you.

For example, let’s say you’re experiencing digestive issues. You start with your internist and undergo testing, but it’s inconclusive. Your doctor refers you to a gastroenterologist who performs invasive tests that produce a diagnosis. A medication is prescribed and you feel better in a few days. Weeks later your digestive issues return. Again, you call the gastroenterologist who suggests more invasive tests, or perhaps refers you to another specialist. You wonder if there are natural or holistic options because you’re hesitant about taking more prescription drugs.

What do you do? Will traditional medicine cure you? Is complementary medicine safe and reliable? Which websites provide credible information? Which doctor is trustworthy?

For me, there was nothing more important than seizing control of my health. It was a priority I couldn’t ignore. Being involved in the decision-making process can reap numerous benefits.

No one knows your body better than you, and no one has more at stake.

Here are a few steps you can take to become your own best health advocate:

Listen to your instincts – Your body is brilliant and gives you clear messages when something is wrong. Make an appointment to see a doctor if you feel something is awry.

Lists – Create a list of your health issues. Include how long you’ve been experiencing the problem, the severity of it, and list any questions you’d like to ask the doctor. Having a list to lean on is both necessary and important.

Research – Medical websites are great resources, but not all sites are reliable. Trustworthy sites should cite an article’s author and the medical credentials for the preparer or reviewer. (Examples of authoritative sites are American Cancer Society, Centers for Disease Control and Prevention, familydoctor.org, HealthyWomen.org, WomenHeart.org, National Institute on Aging, American Diabetes Association, American Stroke Association, National Center for Complementary and Integrative Health, National Multiple Sclerosis Society, National Institutes of Health, PubMed/National Library of Medicine, Mayo Clinic, Medlineplus, and healthfinder.gov.)

Use your voice – Speak up for yourself and insist doctors answer all of your questions. Make sure you give them thorough information and that they are listening. If you’re unhappy with your medical team find another one. Do not allow yourself to be rushed.

Understand how your health insurance plan works.

Review your medical bill for errors. Ask for an explanation if there’s an entry you don’t understand.

Get a second opinion when necessary. Ask for referrals from your doctor or people you trust.

Maintain your own health records. Learn from others who have experienced similar health issues. This can help you emotionally and provides you with the confidence to find what works for you.

Be persistent – If your doctor doesn’t return your call, call again. Insist on getting the answers you need.

Be organized – Never leave an office visit without a follow-up appointment or referrals and labs in hand. Use a written or computerized calendar to keep on top of your schedule. Take advantage of phone apps to keep you organized.

Get answers – If a doctor isn’t providing you with the answers you need find another one. Keep searching until you find what you need. Always keep your eye on the prize of wellness.

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