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 β€œA 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.

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