Days are long and tough.

It is 5:50am and I am reflecting on life and what it has to offer. Lately my life has been up and down. Mostly down. I have been dealing with so much with having both Sarcoidosis and Parkinson’s.

I have been fighting for my life. I don’t say that often. Why because I don’t like to put any light on me. I am fighting just like many others in this world.

Well the last couple of days have been so tough for me. I am use to dealing with tough days , but it has been tough both physically and mentally.

I have been having feelings of why am I still here? I know that being sick does this to you but somedays the feelings are stronger than other days.

So lately I have been fighting harder and harder. I even wonder why I fight as much as I do. Thoughts go through your head, ” Would everyone just be better off if I gave up?” ” Would I be better if I didn’t have to fight anymore?”

Is it a good thing to think these things? No, but I am human. Sometimes I feel some people forget that. I feel I forget that.

I don’t let myself be a human. Just be a person in pain, be a person who is sick. I always feel like I have to be strong for everyone else but why shouldn’t I let someone be strong for me?

It is just the way I have always been.

So here is what I feel. I am in extreme pain! I hurt so bad that I just want to cry. Everyday lately! I don’t cry because I have to be strong for my family. I know that sounds bad, but I have to try to stay strong. I feel if I break up then my family will. It is not my family’s fault. It is just who I am. Sometimes to a fault.

So today I woke up in extreme pain. So much pain it feels like my head is going to explode. I should be use to this, but I wouldn’t wish this pain on my worse enemy.

I don’t feel like my family, not my close family, but my extended family and my friends, truly understands what I go through just to make it through the day. I am sure some people will say I am making something bigger than what they think it is. All I can say to you is ” Live ONE day in my shoes!” Just one day! Let me know how you feel after that one day. I am not trying to brag, I am telling you the truth. Almost everyday I am just blowing off my health and my mental state. According to everyone I am strong! I am a “hero.” Really?? I don’t think I am. I am just one person who is trying to survive.

I also get people saying to me ” If you are so sick, why are you going out? Why are you doing so much?” My answer is this ” Really?? I mean who are you to tell me how to live my life?? Wouldn’t you want to make memories? Wouldn’t you want to live your life with your family? I have an amazing wife and daughter. I want to be able to have my family to say he lived his life to the fullest.”

Just realize one thing! I am not living to make you happy. I am living my life for my wife and for my daughter. If you don’t like it… Oh well! Let me know the handbook of living with a terminal disease. I would love to see it!

So I know this much. I am going to do things my way. I am going to be me! I am going to be selfish at times. I am also not going to care what others think about how I live. It is my life! Not yours!

I know this is an angry post but if you know me at all you know I am me! I am not here to sugarcoat things for you! I am here for my family and more importantly ME! If you don’t like it! There is the door!!!

Yes it is harsh, but I don’t have time for negativity in my life!

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 Patient Ambassador for Illumina 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. View all posts by fjr311