The story of Francinara
When I was diagnosed and had to go through a lot of tests, kidney and bone marrow biopsies, MRI, etc I was scared and hopeless. I was afraid of what the future would hold.
While I was doing my first treatment I was very depressed and lost hope because of the pain and fatigue all day and also because I could not sleep well due to all the pain, burning and tingling.
Listen to your body, change health professionals until you find one you trust and is willing to treat you with respect and kindness and most importantly listen to your concerns.
Having a chronic incurable progressive genetic and “invisible” disease in most cases make people around you doubt all your struggles. You feel alone.
Take care of your mental health and prioritize yourself. Learn to say NO.
Thinking about what tomorrow would bring was driving me insane. So I decided to live TODAY, after all it is all we have disease or not.
Changing this perspective changed my way to face the challenges.
Despite all that happens, I want to keep being that person that always smiled to life and life smiled back to me.