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On Medication:

  1. Get to know your local pharmacist. He/she can be a wealth of information for you regarding your medications and potential drug interactions.
  2. Keep an updated list of your medications, including dosage instructions, in your wallet at all times.
  3. Make sure someone you love, who would likely to go to the hospital with you in an emergency, also has a list of updated medications with them at all times.
  4. Take your medications as prescribed and if you don’t, be honest with your doctor about the reason so he/she can make any needed adjustments to your care.
  5. Be educated about your medications. Know their purpose and have a basic understanding of their side effects.

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On Your Disease:

  1. If you’ve been diagnosed with something…know the name of your disease.
  2. Educate yourself on your disease. Know what it is doing to your body and why, have an understanding of typical/expected symptoms…duration, frequency, etc…
  3. Educate yourself on the treatment options for your disease and ask a lot of questions. How long will the treatment last? What is the goal of treatment? What are the side effects of the treatment? How successful is the treatment? What other treatments are available if this doesn’t work?, etc…
  4. Prior to every doctor appointment, take time to think about what questions you might have, write them down and bring the list so you don’t forget to ask.
  5. Get and keep updated copies of your medical records – especially if you are seeing multiple specialists. Be sure to check these records for accuracy. Make sure the doctors are documenting all your concerns in the event you might one day need to apply for disability.
  6. Take notes or record your doctor appointments so you will have the information discussed to review later if needed.
  7. If you look up your disease on the internet, only visit reputable sites. Mayo Clinic, Cleavland Clinic, WebMD are all good places to start. Stay away from getting your information from “forums”. “Forums” are filled with know it all non-medical types, who may or may not actually have the disease but who like to play doctor, giving unsolicited advice without the education or all the facts.
  8. Talk to your doctor about what type of exercise would be best for your situation…start taking care of yourself…your disease, whatever it might be, is a wake up call, so get moving!
  9. Don’t tough out pain if you don’t have to…talk to your doctor about the best ways to manage it.

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On Living With Chronic Illness:

  1. Learn your limits. “No” is a complete sentence.
  2. Understand that acceptance is a process and allow yourself time to grieve.
  3. Educate your loved ones about your disease but don’t expect too much from them. Some people are very understanding and some aren’t. You can’t change that. Sometimes it is too hard to walk in someone else’s shoes.
  4. If you have an invisible disease, one with no obvious signs, be prepared for stupid comments about how good you look. Don’t waste time taking offense. People often don’t know what to say or make assumptions that if you look good, you must be feeling well. Ignorance is bliss…for them anyway.
  5. Be sure to get enough rest. Go to bed at a regular time and nap during the day if you have to. Fatigue can sneak up on you and take a nasty bite right out of you!
  6. Take the emotional toll your disease has on you seriously and find healthy ways to cope. Talk to a professional counselor if necessary.
  7. If you aren’t already, make sure to eat a healthy diet. Talk to a dietician or nutritionist if you need help getting started. Some diseases require special diets so know if your disease is one of them.
  8. Avoid stress…easier said that done…but a must!

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Healthcare Power Of Attorney, Living Will and Advanced Directives:

  1. Make sure you know your country/state’s laws regarding living wills, advanced directives and healthcare power of attorney.
  2. Make sure you have whatever legal paperwork you need in place designating someone else to make your healthcare decisions, in the event you are unable to do so.
  3. Be specific in your advanced directives/living will and avoid vague terminology.
  4. Make sure the person you designate, knows, understands and will carry out YOUR wishes in the event they need to.
  5. And make sure that person has a copy of your advanced directives/living will.
  6. Make sure your doctors have a copy of your advanced directives/living will
  7. If you change your medical wishes, be sure to put them in writing on the proper legal forms and make sure your designated healthcare power of attorney/proxy knows about the changes.
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