My life in a nutshell.

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!

Author: fjr311

Frank Rivera- Founder/President- Sarcoidosis of Long Island Founder/President- RareNY Frank Rivera founded Sarcoidosis of Long Island in 2012. In 2011 Frank was diagnosed with Sarcoidosis after being misdiagnosed with lung cancer for 7 years prior. Since opening Sarcoidosis of Long Island he has been a local, state and federal advocate for Sarcoidosis to raise awareness for Sarcoidosis in the government sector. He has also spoke at two Congressional briefings for Sarcoidosis. Frank is a National Ambassador for Foundation for Sarcoidosis Research, Global Genes Alliance Member, EveryLife Foundation Working Group Member and Long Island Liaison for Nord. Frank organized RareNY in 2016, to raise awareness for Rare Diseases in New York. He organized “A Day for Rare Diseases” in October 2016 in New York with Global Genes. The event raised awareness for all 7000+ rare diseases to the public.

One thought on “My life in a nutshell.”

  1. You have definitely made a difference in mine! I wouldn’t want you to be anything other than true to yourself – you have such a kind & generous heart. Those of us who know you personally are lucky to do so; those who come afterwards will surely benefit from the hard work that you do.

    Liked by 1 person

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