Life Always Takes Turns You Never Expect

I have spent so many days reflecting on life and where I am now to where I thought I would be. Of course some good and some bad.

Life has a way to changing you and if you let it, you could let it beat you down or you can go with the changes and adjust to them or you can give up or fight the changes in your life. Sometimes fighting in itself can be good or bad.

I believe I have been through everyone of those decisions and actions. I am no better than anyone else. I go through good times, bad times, and some in between times. Since dealing with these illnesses, from 2004 until now so many things have happened.

So many things in my life have happened that I would never ever would of expected. When I initially got sick, my whole life got turned upside down. The real problem was that I let the diagnosis run me. I didn’t think I acted. I didn’t look into what was happening to me, I just reacted to what the doctors said. I wasn’t advocating for myself , I didn’t ask questions, I didn’t do anything to actually make sure the doctors were right or if my initial diagnosis was right. I can honestly say that I just was trying to understand what was going on that I forgot to think about me. I forgot to understand what I was going through. I didn’t question anything, which isn’t who I am. I just did, not ask.

So in 2011, I was diagnosed with Sarcoidosis. When I was diagnosed and told it won’t be bad. Just some prednisone and I will be feeling better. So when I started looking into it and I was going on and things weren’t getting better I started to really find out information on the disease. When I was told I had Sarcoidosis, not Cancer, I wanted to find out more about this disease. I didn’t want to be a victim. I wanted to know how to fight this and what to expect. I also looked for specialists in this disease. I became active in my treatment not reactive.

So back to why I am writing this today. I have had so much time to reflect on my current life, my fight against this diagnosis and every new diagnosis that has come. I became proactive not reactive. I decided I had to fight this because giving up was not an option. I started reading and asking questions on things I had no idea what it meant.

The biggest thing in my life of course was going to change my life but I had no idea how much. Having Sarcoidosis and the many other diseases changed my outlook on life, changed my emphasis on what meant and still means the most to me. I have learned so many new things that if you asked me when I was younger this is where I would be I would of thought you were crazy. I grew up learning things, many business oriented, but now I still use some of my business expertise, but most of that went to the back burner to learn how to help myself at first to learning how to help others.

I had to re-program my mind which in itself is hard in your 40’s, but to start from scratch to a subject I never liked in school, Science. I had to learn chemistry, what meds go with what and what those reactions were or are. I had to learn biology, I needed to find out what would happen to my body when Sarcoidosis attacks it. I needed to learn nutrition to make sure what my body could handle and to make it stronger. I had to learn Earth Science, to learn how the environment affects my disease. I never thought I would need to re-learn so much Science.

So all these things bring me to where I am now. Today I was thinking about what I have done , not the look at me things, but the things that made me a better person and be better for others as well. Each accomplishment has been made me a better person. Made me a better advocate, made me a more sympathetic person as well.

When I was younger I would never think that I would write one book nevermind two books. My past was hard to live, so for me to re-live it was so tough. Most of it I tried to forget about. So why write the first book? I felt and still feel that to actually know me you need to know what made me who I am. I also found out putting it on paper helped me to deal with my past.

I also never thought I would be a published author in magazines and online articles. I also can’t believe I has had the impact I have had on the community. Not to be braggish at all. I never wanted to be the “one” or the face of a disease. There are over 200k faces of Sarcoidosis. But I do understand to get what we as a community want and need that someone needed to put a face to a disease. I was very reluctant at first. Then after being told that it was needed, I started to be more visible.

When I became an advocate I was putting myself all into raising awareness and government awareness. I spent years doing it and feeling confident at what I was doing. But things change. Health conditions change as well. I had to adapt to my changes in health and also to a pandemic that changed the whole landscape of advocating.

I tried to adjust and try to advocate in different ways. Some times kicking and screaming to change, but I found out that there are so many different ways to help the community. I started to go after research, and if you know me you know that was the last thing I wanted to do. The funny thing is that I actually like it, don’t tell anyone I am loving it. I started working on different parts of research and also started working on the mental aspect of this disease and what it can do to hurt, as well as ways it can help the community. I have also got into more of the medical side of this disease. The biggest surprise to me is that I helped on a medical paper with some of the best people I have ever met. I actually am so proud I was even a little part of this. I learned so much by changing who I am and what I stand for. I learned to adjust to the times and as well as the means of what I could do and couldn’t do. I also am very proud that I went out of my comfort zone and took on more and more opportunities and I didn’t limit myself to only things I do know and take a chance on things I thought I didn’t know. I am proud of wwho I am now. If it sounds like I am bragging oh well. Maybe at times I need to brag so I do understand I am worthy.

There are many times in my life where I never thought I was worthy of any of this. I would of been part of the background and happy about it. I talk about being worthy, because it wasn’t anyone else’s opinion on me that brought me down. It was my own opinion of never feeling worthy to anyone else in anything I did.

It is very difficult for me to believe I am worthy of anything. I feel like I am no better than anyone for that matter. I have always been this way. It truly isn’t anyone’s fault but my own. I didn’t have people saying to me that I wasn’t worthy, I just felt that way. It is something I put on myself.

While having this time to reflect has made me better understand myself and really am working on loving me. Even though I go through one step forward and two steps back at times I have realized that doesn’t define my worth. What defines my worth is how I feel about me. I also learning, somewhat that is, to try to take compliments better. That is tough when for so long you didn’t even think you deserve them.

I will always be a work in process. That work is ever changing. That work is evolving. That the person I thought I would be is also ever evolving, making new decisions and don’t be afraid to take chances, don’t be afraid to do something you never thought you would do. I will fail, but it is better to fail at trying then to never have tried at all. So I will keep on trying to better myself, keep on trying to make changes to better myself. Try to be the better me! I know there is so much room for improvement in me. I just want to be a better me. Be the better version I can be proud of. But also knowing this may be the best me. Last but not least I am working on being proud of me. That fight is ever going!

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.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s