Today I woke up early. I wake up early these days not because I have to but because my body says so. Today is because of the pain.
But you know what? I am very thankful that I get to wake up! You see, somebody with a rare disease like myself can’t and don’t take waking up for granted.
I am so blessed to be here! I realize I wake up in pain everyday and can’t do so many things that others do take for granted, but I am here and I am still a force to be reckoned with! I have a voice! I will make sure people will hear me. Some may not like what I have to say but I speak so others can understand what it is like for a rare disease patient like me to live each day. I also speak for many others who can’t speak up for themselves.
I took some time to do a little recouping and soul searching recently. I realized a some things lately.
One thing I realized is that no matter what I am destined to be me. You may say well of course you are. Well sometimes we forget what it is to be ourselves. I know who I am. I am someone who cares, sometimes too much, about others and myself. I need to be me. I need to do what I do the way I do it. I can’t be someone else who people want me to be.
Just know that the person I am may not be to everyone’s taste, but I am really here for the greater good for the Sarcoidosis and Rare Disease Community. I am in it for the whole not for me.
I have said in past blog posts that I most likely won’t be here for a cure for me, but I am here for a cure and to make a difference for so many others that have a rare disease.
I really am not a person who thinks I am better than anyone else, as a matter of fact I truly believe the opposite. Ask many that know me, I really don’t know why people even know who I am.
All I am here to do is to make sure WE as a Rare Disease Community have a voice. I am one of so many people who try to make sure we aren’t forgotten.
I want one day when the over 7000 rare diseases have a cure not only 5%.
I hope to see it and get to say I had a say in that! I want to be able to say I made a difference.
So these are my thoughts when I wake up at 3am in the morning.
I hope I make a difference in your life! Many of you have made a HUGE difference in mine!