Today has been a real tough day for me. As you all know I have been going through a lot lately. As per usual I only tell half of it. Why?

There are many reasons for this. I don’t want to be a complainer. I also need to keep things to myself so I don’t worry others. I know that isn’t the best way to do things but it is me. So I do what I feel is necessary. For me and for the benefit of others. I know that is selfish of me, but sorry not sorry, deal with it.

Most of my life has been a series of ups and downs. I am sure many of you know what that feels like.

I have dealt with childhood leukemia. I have dealt with foster homes. I have dealt with my Mom being sick most if not all of my life until she passed away in 2001. I dealt with my father not being in my life most of my life.

I say this not for pity at all. I say it for understanding. I always thought in the ways of survival. Not in the ways of right and wrong for a long time. Don’t get me wrong I didn’t look to do bad things. What I am saying is that my decision making was skewed by how to survive. Let me tell you it sure is not a great way to live. Not at all!

So as I grew up, it took me awhile to figure that I didn’t have to think like that anymore. It was freeing. It was also scary for me.

So life made me who I am… Isn’t that what life is suppose to do?

So I get the call today.. Something I have been told by others but hearing it from this doctor makes it so real…. Don’t keep your hopes up to get your defibrillator/pacemaker.. No surgeon or doctor will do any kind of surgery on you now or maybe even ever… My white blood cell keeps on going up and up. So far up that nobody would dare open me up for anything. What makes it worse is that they have no idea why it is climbing.

So if I go in the hospital with my White Blood Cells so high I will catch something and possibly die. If I stay home I could catch something and die. So what do I do? I have made my decision to live. I can’t live on the what ifs. I can’t live my life in a bubble either. I haven’t been feeling well lately. But every test has come back normal. What is it? We don’t know.

I do know one thing…. I am going to fight and be me. I am not trying to die but I am trying to live while I can. I won’t lie the news did depress me. It is scary to keep on hearing bad news after bad news.

So I wrote this post because like the title says these are things I needed to say. I may show an outward strength, but I am just human. I worry, I get depressed, I cry, and I ask why me? I also ask how much longer can I take this?

I do know that I will still be me, smiling, fighting and saying I will be okay. But know deep down I am scared just like anyone else would be. I am wondering what is the right thing to do?

So we you see me smile just know that I am not “fine.” I am just being me and not showing everyone the physical and most importantly mental pain and anguish. I am also not showing the uncertainty of am I doing the right thing and for that matter what is the right thing!!

Just know I am not ever giving up. I am just doing what I know to do. Is it right to put on that strong face? For me that is who I am. I will be a bit more making sure I am being careful, but I need to be me.

I don’t know if this post makes any sense at all. I am a bit scrambled lately. But I always have been one to say it how it is. I also have always written what my thoughts are right now! I hope you can understand and truly get to know me.

Author(s)

  • Frank R

    I advocate for the Sarcoidosis Community for all of those who can't advocate for themselves!

    Stronger Than Sarcoidosis

    Frank Rivera is a published author of two books "Walking in Silent Pain."  and "I Have Sarcoidosis but it Doesn't Have Me." Both can be found on Amazon. Frank Rivera has also published a medical paper with doctors, researchers and fellow advocates.Comprehensive #Patient partnership paper: Health-Related Quality of Life in Sarcoidosis: Diagnosis, Management, & Health Outcomes https://t.co/niiwZxUj7j Sarcoidosis of Long Island and Stronger Than Sarcoidosis have grown into an advocating organizations to fight for the rights for people who have this rare disease called Sarcoidosis. We fight for those who can't fight for themselves. We work with local, county, state and national government officials to gain recognition and raise awareness for this rare terrible disease Frank Rivera- President- Founder/President- Sarcoidosis of Long Island Founder/President- RareNY Thrive Global- Author and Blogger 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. Frank strives to raise awareness for Sarcoidosis nationally, but specifically in the government sector. He has represented the Rare and Sarcoidosis community as a speaker at two Congressional briefings for Sarcoidosis. Frank is a National Ambassador for Foundation for Sarcoidosis Research. Named RUGD Ambassador for Illumina October 2017 Frank organized RareNY in 2016, to raise awareness for Rare Diseases in the state of New York. He organized “A Day for Rare Diseases” on October 15th, 2016 in Long Island NY, in partnership with Global Genes, to raised awareness for all 7000+ rare diseases. In recognition of Frank’s efforts, Suffolk County and the town of Brookhaven officially declared October 15th “A Day for Rare Diseases”. Frank was nominated by Global Genes, a nonprofit that serves the rare disease community, for advocate of the year. Global Genes has also nominated Frank for their annual Rare Champion of Hope award. He has also been nominated for seven awards by WEGO Health partners over four years, Patient Leader Hero as well as Best Kept Secret, Lifetime Achievement Award and Best in Show Blog. He was also nominated by RDLA for advocate of the year. In December 2017 Frank was named People of the Year in the newspaper organization TBR News Media six newspapers one being The Village Beacon Record News. In 2018, Frank was interviewed by NBC Nightly News about the “Right To Try” bill. They did a whole segment on his struggles and strength dealing with these diseases. In 2019, Frank Rivera has promoted Awareness for Sarcoidosis with a billboard in New York Times Square on multiple occasions. Posting Sarcoidosis events, and Sarcoidosis of Long Island and Sarcoidosis patients getting a chance to show their faces in Times Square and their stories. He has also been in multiple television,podcasts and radio interviews both local and nationally raising Awareness all while being downgraded from chronic to terminally ill. He refuses to let his illnesses win and take over his life. His motto is "I have Sarcoidosis but it doesn't have me!" In 2019 his organization has worked on the motto of #YouAreNotAlone. Making sure no Sarcoidosis, and all rare disease patients know they are not alone and we are here for them for advice, support and will help find medical and mental health professionals when needed.