Happy Birthday?? 52 Years? Wow!!

Here I am in deep thoughts and emotions.

Why? Well you see I truly can say I NEVER thought I would make it to 51 never mind 52. July 3,2019 I am 52! 52!!

I have so many thoughts that are going through my mind. So please bare with me as I try to put these thoughts and emotions in a blog post. It may not be for everyone and may be hard to read or understand. I know it will not be easy for me to write.

Let’s start with something that I just went through not long ago. I went to a neuropsychologist because I have been having memory issues and also hallucinations.

While there I had to write many things that were very tough to write never mind think about. When you start to write things that happen in my past they were very extremely emotional.

I started out by writing about my childhood. At the age of five I was diagnosed with childhood leukemia. That was very tough to deal with. So tough that I really don’t remember so much of that time. I actually put it in the back of my memory I feel to protect me from all of the pain and suffering I went through. I know it was really tough, so tough that I remember laying on my Mom’s and my Godmother’s and many of my Mom’s friends lap just crying due to the pain and due to not being able to sleep, not being able to move off the couch, and most importantly not being able to be a child. I lost out on so much in my childhood due to this disease. To me I actually get more sad, not that I was so sick but that I don’t remember most of the four years I was sick. Some parts I do remember are not all even great memories. I remember falling asleep on the bus in Kindergarten and waking up after my stop. Another memory is when I was told I couldn’t go to school anymore.

Let’s remember when I was diagnosed with Leukemia in 1972. Back then there wasn’t many cures for childhood leukemia . Basically it was chemotherapy . That was it! The rate of beating childhood leukemia wasn’t great either. I truly don’t know how I beat it. all I know is even as a child I had a fight in me that many people didn’t have. You see growing up in our household you had to be a fighter or you wouldn’t of survived. That is not being dramatic at all. It was just they way it was. My Mother had major heart problems, our Dad left us so we made the best out of what we had. I remember being told that I started reading with the help of my family by reading the sports section. I also remember very scarcely that I started reading the World Book Encyclopedias from A-Z.

I remember having to deal with going to two foster homes. The first one was very mentally abusive. They knew I was sick but it was like they didn’t care. They got on me for not eating everything on my plate, remember I was still on chemotherapy at that time and you don’t eat much then. Every time I didn’t finish dinner I had the same food for breakfast. I have talked many times about other things they did, like lock me in my room for thirty days straight. Well I also left and walked to my Great Aunt and uncle’s house.

Then we go to 2004. I was not feeling well, had trouble breathing as well as fatigued. So I ended up at the Emergency Room. I remember the ER Doctor telling me I needed to see an oncologist because I had masses in my lungs. So I made a quick appointment with the oncologist and we went and got a biopsy.

Then the world stop!

The famous words ” You Have Lung Cancer!” came out of the doctors mouth. I was devastated. I have a daughter that isn’t even two yet. They told me that I couldn’t have surgery because the cancer was in all over my lungs. They told me that the only thing we can do and hope it worked was an aggressive chemotherapy and radiation regimen. Well I was on that chemotherapy and radiation regimen on and off for four years. Those four years were so tough both physically and mentally. I went down in weight to 98 pounds. I was so tired that I couldn’t do much for days. It was so tough mentally because I didn’t feel like I was holding up my end of the bargain with my daughter, even though I watched her just as much if not more. I even moved from Florida to Oklahoma in the middle of my Chemotherapy and Radiation regimen. I moved there to be closer to my daughter. I was able to get my treatments in Oklahoma until I was told I was in remission. I never thought I would hear those words. The reason is I had some severe reactions to the treatments that we had to work through.

But in 2008, I heard those amazing words “You are in Remission!”

It was amazing. I was still beat up from the treatments, but my outlook on life was so much better. Then I met my wife Diana on Facebook and in June 2009 she came to Oklahoma to visit me. We hit it off right away. In the meantime I was having a very rough time dealing with my daughter’s Mother and her family. It got so bad that her Mother’s family came to my home and pointed a gun to my face. That is right a gun pointed and touching my head. That was crazy and beyond scary. After that I knew I had to leave, if not for my own safety but also for my daughter’s safety. I didn’t want her to be put in the middle of the craziness.

So I moved back to New York.

It was great. I was with at that time, my girlfriend. I found a job and was doing well except for missing my daughter.

Then in January 3, 2011, my fiance, now my wife was pregnant and had to have the baby early due to Preeclampsia. My now wife had our daughter Isabella at twenty five weeks, but she was only developed to twenty weeks. She ended up living for five days. On January 8, 2011, Isabella passed away. That really took a toll on both of us. By the end of January 2011 I had stomach problems due to my IBS. I went into the emergency room, and they took an X-Ray of my abdomen. In that X-Ray they found that my masses in my lower lobes were back. I was devastated all over again. They told me to schedule another biopsy with an Oncologist in Stony Brook Hospital. I ended up going and then was told I didn’t have cancer but I had this rare disease called Sarcoidosis. I never knew what that was. So I took to google. I decided to go to one of the best Sarcoidosis clinic which was in NYC, Mt. Sinai. There they got all of my medical reports from Florida and they found out I was misdiagnosed in 2004. I never had lung cancer.

I was both shocked and upset that they put my body through so much for a misdiagnosis. I was told the chemotherapy helped the Sarcoidosis masses but the radiation hurt my body so much that my Sarcoidosis was able to go through 75% of my body.

It has been a struggle ever since then.

Since 2011, I have had eight surgeries, many hospital visits and stays. and so much pain and a major change in my life. I had to go on disability. I was not ready to handle that at all. That meant to me I was not the person I was or will ever be again.

I had to accept the new me! But who was this new me? How can you adjust to the new me when the new me seems to be changing daily? Well I figured out I wasn’t going to just sit there and let Sarcoidosis take over my life. I started a nonprofit organization, Sarcoidosis of Long Island. Making that organization has been both a great adventure but also a rough endeavor. It is great in the fact I don’t have time to wallow in my pity of having this non curable disease. But it can be hurtful in the aspect of time management and also health management. You want to do so much and help so many people you can forget to help yourself. I still don’t do such a great job at managing my time, but I am trying. I will always be a work in progress.

In 2017, I was diagnosed with Parkinson’s. That was a big blow to me. I knew I was having symptoms but I was told it was essential tremors. Finally I was diagnosed with the right disease yet again. After learning of that diagnosis, in April 2018 I was having many different neurological issues. I was having migraines for over 9 months straight and also having trouble with my memory. I was told by multiple doctors I had only a couple of months to live. I was told that I was not getting enough oxygen to my brain. Their was another problem that was a major problem. My White Blood Cell Count was 10 times the normal. So surgery was not an option. All was lost until my Sarcoidosis doctor found a doctor at Johns Hopkins that did this non evasive surgery that could alleviate some of the problem. Well she had me try some medication to help first and .. it did help! Thank God! I was getting relief from the migraines and even more important My blood vessels were doing their job. Well at least for now. It is not a permanent fix but it is relief for now, but most importantly it has extended my life. So for that alone I am happy.

I was told that they would be shocked if I made it to my fifty first birthday. Well here is my fifty second birthday and I am still alive. I count everyday as a blessing. I also try to make sure I enjoy each day as it may be my last. Nobody ever knows exactly when we are going to die, but I do know that my health has always been a deterrent for quite a long time.

So here is # 52! Yes I am so happy to have made it this far. I went to see a neuropsychologist just a couple of weeks ago. He told me with all that has happened with me health wise and also just everything that has happened and I have been through that I how could I not be clinically depressed and have anxiety? He said that actually my memory isn’t as bad as they thought it would be with all of the events in my life, as well as all of my health problems. He said my attention span is very limited but that is also to be expected with everything I have been through in my lifetime.

So here I am happy to see my 52nd birthday, but also reflecting on what a life it has been. Definitely not easy at all, but it is my life. I have to be and been a fighter all of my life. It truly is the only thing I know to do. Yes I get depressed and will be depressed for the rest of my life. I also know that almost four years ago I contemplated suicide. I put myself in a seventy hour watch in a hospital. So yes I do know the good and the bad.

I also I am not a person who relies on my past. I am a person who will always be emotional. I am a person who cares so much for others some people say too much. I would never trade who I am. I am me! My past has made me who I am. The good, the bad, and the ugly. I am not perfect by any means. I am just me. Someone who has been dealt some tough hands and also been dealt some amazing hands. It is all about how you play these hands that are dealt to you. I have made many mistakes in my past and I will make mistakes in my future, it is how you react to these mistakes that make the person a better person.

I am truly proud of who I am and what I have become! It stinks that my health had to be a casualty, of all this, but if it didn’t I wouldn’t of met so many amazing people. I consider many of them to be family. I always will!

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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.

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