Living with Chronic Illness

Myelofibrosis is not always curable, and for this reason, it is necessary to consider that the changes that lie ahead may not be temporary, but possibly lifelong. When you have a chronic illness, it becomes a part of who you are and how you live your life. It may require changes in your routine or in how you care for yourself, as well as what you need from others in your life. It does not, however, define you. You are not your disease.

To help manage the impacts that cancer has on your life, click here for information on coping with the cost of cancer care and here for information on how to develop a healthy lifestyle during cancer treatment.

It is a good idea for all adults, no matter their health situation, to prepare for the future by having their affairs in order.  These plans help your family and your health care team understand your wishes.  The following legal documents are tools to help you do that:
  • A will is a legal document that designates who will receive your money and belongings and who will be responsible for your children (in the absence of another parent). If there is no will in place, an agent of the state may become responsible for these decisions.
  • A living will is a legal document to let your doctor know what kind of medical care you want at the end of your life if you can’t speak for yourself.
  • A durable power of attorney is a person who will make healthcare decisions for you if you are unable to make them yourself.
  • A do not resuscitate (DNR) order is an order for your doctor if you decide that you would not like heroic measures to be taken in the event of cardiac or respiratory arrest. Choose someone you feel very comfortable with to assist you in making plans like these. If you make these plans, you will help your family and loved ones by not leaving them with terribly difficult decisions. You will be reducing confusion and helping everyone around you feel more comfortable that the decisions made are yours.

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