How do you deal with the mental and emotional challenges of having this disease? While I try to just get out there and live my life everyday, there is not a day that goes by that I wake up and wonder, “How much longer before my kidneys/heart/etc. fail, and then what happens?” “Is every little ache and pain I feel AL-Amy related or just getting older?” And the list goes on and on.

I have those same feelings. My way of handling this is taking one day at a time. I wake up and say thank you Lord. I’m awake, my heart is beating, I can breathe and I can pee!! It’s going to be a good day!
And then I’ve learned to pace myself through the day and rest when I need to rest. It’s a matter of acceptance I believe- not that I always like it but it’s what I’ve been dealt. I refuse to worry about the next amyloid but do pay attention to my body function. I just don’t dwell in it. I hope this helps😊

Oh my gosh, Theresa, your answer could be exactly mine, including how fair is this to my spouse. Sometimes I do so well emotionally, but every once in a while (now), I get beaten down by the fatigue and struggle significantly. I remind myself that it in part of my life now and yet I am so grateful to have a life

I don’t like to use the word terminal. I say it’s a chronic disease. With that said sometimes I am consumed with thinking about how much time I have left. I try not to think too much. That’s when you get into trouble! Just yesterday I was thinking that it’s so hard to go anywhere. What quality of life do I have because I’m tied to the bathroom! How is that fair to my partner 😿 Steve is right. It mentally beats you up sometimes.

The fact that the disease is terminal and it is not taken as seriously as other well publicized and financially supported diseases. Not enough is done for Amyloidosis.