Personal Life…

As I sit here today I am in tears…. Why you may ask?? 

My life has been full of ups and downs, and I do mean a lot of ups and downs! I know many people who have had less that have not made it to where I am and I know many others who have had more and have done so much more than I have.

Let me start off by saying this will be real hard on me, but I have to do this! I am going to start at the present for a moment then go back to the beginning.. Some of you know about my story, but even if you do, I am writing this because I am in a place where I need to put some of these feelings and memories in perspective for you all to understand me.  The true me!

Yesterday I took my daughter to The Today Show. It may not seem like such a big deal, even to my daughter it may not have been a big deal. There are many reasons I took my daughter out of school for this. First off it was International Day of the Girl! Second the strength my daughter has shown me and so many that actually know her, she has the strength of many so she needed to be here today! I knew, even if she doesn’t understand the significance of me taking her there, that I wanted to make a memory that she won’t forget, about us. I know that my Mother use to take me to places that I have always remembered even now. I want my daughter to remember those special times! Yesterday was so amazing, to see such strong women of all ages, especially during these times when men of all backgrounds are treating women as second class citizens. I want my daughter to know I support her in every decision she makes. I know she won’t always make decisions I may like but I will support her NO MATTER WHAT! Seeing Meghan Trainor, Jennifer Hudson, Kelly Clarkson and most importantly Michelle Obama. I have the utmost respect for Michelle Obama. I will never forget when she said ” When they go low, We GO HIGH!” After all her and her family has been through she still has the class to be so AMAZING! When we were at the Today Show yesterday Savannah said to me one thing that made me realize what this meant to her and it was something so simple. ” Oh My God Michelle Obama is going to be here! Wow I love her!” With that I knew I must of done something right!!!!

So many people say things if you are terminally ill why are you going out?? Why because I am not dead!! I have a family that needs me both emotionally as well as physically as much as I need them. I have some great friends and people in my life but sorry nobody will ever mean more to me than my family. I have made many mistakes in my life but my family is my source, they are why I am still here.

Okay so now that I have said that I am going to go back to the beginning. I have been through so much as a child some you know some you don’t. Let’s start with at the age of 5 I was diagnosed with leukemia. I don’t remember that much from the ages of 5 until the age of 8. What I do remember is that I was very sick and had no energy and seeing doctors all the time. I feel I blanked it out because of how hard and terrible it was at that time. I was not allowed to go to school from half of kindergarten all the way until March of fourth grade. I remember my brothers and my Mom helping me learn to read as well as doing math and just learning in general. Then at some point I started to read Encyclopedias, to be more specific the 1972 edition of The World Book Encyclopedias. I do remember that by the time I was ready to go back to school I finished from A-Z. I do know from my Mother that there were many times I could of died from being so sick. It is something in my history I still haven’t been able to get all the details and still not sure if I want to know the details.

During my life my Mother was always sick herself. She had a bad heart for so many years of her life. Due to that she was not allowed to work. We really had to always make due with what we had and that we did. I won’t say that we didn’t complain, but in the end I know my Mother was so amazing! She gave me the strength to be the person I am today. She went through as many as 8 or more heart surgeries that I can remember. I remember hearing a story from my Grandmother that when my Mom was in the hospital one time in 1975, the doctors told my grandmother in front of my Mom, thinking that she couldn’t hear because she was in a coma, that she won’t make it through the night. Well I can truly say this is where I get my Mom’s fight. She woke up the next morning. She woke up and told that same doctor to F off. Those were actually her first words when she woke up. Now you can understand why I am who I am. You will understand more as I go on with this.

As a child I was in two foster homes, because of my Mother’s heart problems. The first foster home was in one word, HELL! They were just a Foster Family for the money and at any given time they had 4 or more Foster children plus their own 2 children. I remember that they were the type of family that if you didn’t eat all of your food you had it for breakfast, one reason I don’t like Macaroni and Cheese to this day. I actually go back to those days, I guess it is a PTSD episode. I also remember the family also punished me for 30 days for something I didn’t do. That wouldn’t be a big thing but my punishment was 30 days in the bedroom, only time I was allowed to leave was to go to the bathroom. I ate and slept, that was all I was allowed to do. It scarred me for life. Very vivid memories. To make it through that was just the thought I had to be strong for my younger sister since it was only her and I together while my two older brothers were in a different home. It was a lot for a a very young boy who couldn’t even go to school because I was too sick. Right there I knew one thing! I AM STRONGER THAN I EVER KNEW! I am not trying to “Toot” my own horn, but this is and was true life, My True life!

I have always been a fighter, even when I didn’t know it.So much in my life has tested me and my strength, but also made me strong for my biggest test. THE TEST OF LIFE OR DEATH!

Because of my Mom not being able to work,  we weren’t able to stay in one house for too long. We rented for most of my life. We moved around often and my mother was on disability so we were on Food Stamps. Yes we were on food stamps, for most of my childhood life. So when people talk about food stamps and Medicaid I take very high offense to it. My Mother didn’t want to be on it. I could see the pain in her face when I was young about being on it. She had NO choice! Not everyone uses Medicaid to beat the system! Now that I am on disability and on Social Security due to my many health issues, I don’t want to be on it either, I have no choice too. It really shows me how hard my Mother had it. I don’t know how anyone could live off of this! My Mother did it with 4 children. To this day I look back on My Mother in awe. I know I hold My Mother on a high Pedestal, I know she wasn’t perfect, hell she told me more than once that she wasn’t, but I am also not naive to think she didn’t give up so much for all of us.

On October 2, 2001 I lost My Mother! I moved down to Florida in January 2001. I moved in with my Mom because she asked me for help. I remember seeing her so sick that past year. It was so tough to see this strong woman fighting but getting weaker and weaker each day. It was a monumental moment for me when she passed away. My main support system was gone. It took me some time to really get over it! I can say to this day I never totally got over it.

On December 28, 2002 my daughter, Savannah Rose Rivera, was born. What an amazing day that was!! I remember getting to see her for the first time. Carrying her to the nursery. She was so beautiful! It was so amazing! She was the best thing that happened to me at a time I needed it the most! She is the second coming of My Mother. So many similarities to my Mom. Unfortunately my daughter has been through so much herself. She is another one who is so resilient and keeps moving forward. After moving back to NY I wasn’t able to speak to my daughter for close to 4 years. When I finally received full custody of her in 2015, it made me close to being complete.

As many of you know I was misdiagnosed with Cancer in 2004, As I went through Chemotherapy and Radiation treatments I thought that would be the lowest part of my life. Boy I guess watch what you ask for.

In 2009 when I moved back to NY I finally felt comfortable. Honestly only took 42 years. I knew I didn’t have my daughter at the time, but I felt things were moving in the right direction.

In 2010 we found out that my wife Diana was pregnant. We thought wow what a great present! My daughter Isabella Joy Rivera, was born on January 2, 2011. Way earlier then she was supposed to be born. She was only 25 weeks old. We knew it was a long shot that she would make it. She lived for 5 amazing days! She fought tooth and nail to try to live but in the end her lungs were underdeveloped and on January 8, 2011 she passed away. I have never had that feeling I had when that happened ever before, even with my Mom passing. You are never ready to see your own child pass away. I don’t care if it was 5 days or 100 years, you should never have to live through seeing your own child pass away.  I remember that night she passed like it was yesterday. It was so tough for me, but even more so for my wife Diana. Just remembering the sleepless nights and feeling so helpless to help my wife was so tough. There was one thing that will always resonate in my head, someone close to me saying they didn’t acknowledge my daughter Isabella, because she didn’t live long enough to be known. To this day I will always remember that!!

Unfortunately as usual we didn’t have enough time to mourn our daughter, Isabella. At the end of January of 2011, I went to the emergency for my IBS and while doing a CT Scan they found masses in my bottom lobes of my lung because when doing the CT Scan of my abdomen they caught the two bottom lobes of my lung.

That started the journey of Sarcoidosis.

What a journey it has been! 8 surgeries in 6 years, removal of my gallbladder, and so much pain and missed opportunities that has been testing my will to live more than once. Can you imagine finding out you never had cancer, that you went on 4 years of radiation and chemotherapy for nothing??? Well welcome to my life.

So when I got diagnosed with Sarcoidosis I already had it in 75% of my body, now I am safe to say I have it everywhere in my body except for my liver and kidneys. What a blow to my body. Trying every drug known to doctors and then some to find out none of it is working. Then 3 years ago my doctor decided to try me for a clinical trial. I wasn’t accepted in because my Sarcoidosis was too far advanced. Then we tried to file with the FDA to try an experimental drug. I was feeling good about it. There were known cases in Europe and Asia that were reacting well towards a medicine. I was denied Compassionate Use 2 times because I had 2 different illnesses at the time. In August 2017 I was diagnosed with Parkinson’s. It was another misdiagnosis, they said I had essential tremors back in 2012 due to the Sarcoidosis. Well they thought they caught that early enough because the medicine was helping with the shakes. Little did we know that the Parkinson’s and the Sarcoidosis were double teaming my brain and fighting each other for space in the brain. In April 2018, I was told by my doctors that I was terminally ill, that my brain wasn’t reacting to any of the medicines. They told me that they didn’t know how long I had, but if I didn’t slow myself down I would be in real trouble.

Even though I have been on disability since 2013, I was advocating first for Sarcoidosis Awareness to government officials trying to get recognition for a disease that was getting NO support from the government. I would go to local government meetings and made good contacts in the Town Legislature so they made April Sarcoidosis Awareness Month. I worked with some of the County Legislatures and received a Proclamation stating that April to be Sarcoidosis Awareness in Suffolk County. Then I received one for New York State. I was also working with the Federal Government both Senators and US Representatives to make April Sarcoidosis Awareness Month Nationally but due to the climate in Washington DC I couldn’t receive a bipartisan bill introduced. Meanwhile in those years I participated in one Congressional briefing in Washington DC in 2015 then organized another in 2017 with Foundation for Sarcoidosis Research. I also went on to help the rare disease community in 2014. I joined EveryLife Foundation working groups and even asked to be chairperson of one of the working groups, in 2017, to help get laws passed, as well as Global Genes Foundation Alliance Member in 2015, and a NORD New York Liaison in 2017. In 2016 I even set up “A Day for Rare Diseases!” It was a day for all rare diseases to discuss there diseases and the community and government officials as well as doctors all could talk and learn about Rare Diseases.

So in April 2018, I received the news I was downgraded from chronically ill to terminally ill. I was very distraught. I called some people who I considered friends in the Rare Disease Community and was working with me on a Mental Health project that day and the response I got was “Well what does this do to the project?” Not are you okay? Not do you need anything? So I was extremely upset so I dumped the whole project. I did not feel comfortable handing over the project that I, and only I, worked my butt off to people who didn’t care about me. How could I be assured they were going to carry out my vision? I know I did it in haste and I am sorry to all that it would of helped. But I am not going to have my name on something that I worked so hard on, to have it done wrong! So when that happened I started to get calls from NORD, and EveryLife and others telling me to step down from all of my positions without even being asked my side of what happened. Then I got ostracized by most of the rest of the Rare Disease Community. I felt really used and upset. I helped out whenever they asked me! I bent over backwards for them and to get slapped in the face really hurt!!!

So here it is October 2018. I have been having so many health problems since April including, Brain and memory issues, fainting, dizziness and worse of all migraines that have been non stop for over 6 months now. No medicines are helping me! Nothing!! I just sit here and smile while my brain is disintegrating. As I said before my brain is being attacked by both the Sarcoidosis and the Parkinson’s and I am losing! They don’t know what medicines to give me anymore!

So what do I do? Honestly?? I go out to do family things and make lasting memories for my family to remember and I get criticized, I stay home I get criticized, It doesn’t matter what I do it will always be wrong to someone! I am tired of hearing it! I am tired of being questioned if I am terminally ill. I am tired of people saying well you look great! I am even more tired of everyone telling me what I should or shouldn’t do! People think when you say terminal you should be in hospice or in a bed dying! Well let me tell you something! I will not be going out that way! I will be me! I will be making memories with my friends and family! These memories aren’t for me! I won’t remember them when I am gone! I am trying to make sure that my family and friends have some good things to remember me by.

Okay my last piece is how I would like to be remembered! I am not asking much!

I just hope I was able to make a difference in one person’s life! I want my wife to say I was a good husband! I want my daughter to say I was a good dad!  I want nothing more to be remembered as a person who made mistakes in life and had hard times but persevered through it all and tried to be the best person I could be!

I also want everyone to know I tried so hard to help those who weren’t able to help themselves!! 

Honestly I don’t know how and when I am going to die. I am a realist and know it could be sooner than I ever wanted it to be! I do know that I am going to live as much as I can while I can! 

Don’t judge me unless you have been me!!!

 

 

 

My Advocate Story Now and Why Me?

So here I am today in my thoughts thinking about why me?

I know I have had three main diseases, Sarcoidosis, Sjogren’s Syndrome and Parkinson’s. I know I have been through so much in my life from childhood leukemia to being in two different foster homes as well as having my daughter Savannah to losing my daughter Isabella to marrying my both my love and my best friend, Diana.

I have been through so much this year that I never saw coming going into the year. I started the year very optimistic. But as life goes you face ups and downs. Well this year has gone downhill since April.

April was a crazy month. I was told by my doctors that I have been downgraded from chronically ill to terminally ill. When I was told it took a bit for me to deal with it but my first reaction still rings true. I told the doctors “Thanks but that is just a word to me!” I knew I had to cut back in all of my activities and my endeavors.

Due to that I upset many people, but I also know a lot of people who upset me. I thought I had some friends, but ultimately realized that I was being used. I haven’t said anything about this, but it really hurt when the people who I thought were close to me didn’t care when I said I was diagnosed terminal, their first comments were “What does that mean to the project?”  Not are you okay! So I realized where I stood. I do know I personally didn’t handle it well either. But how do you handle being told you are terminal ? There is no blueprint for that. I should of let them run the project. But after the exchange I didn’t feel they had my goals at hand. What I did realize is that I needed to stop feeling that I was being used. I worked so hard for the rare disease community. The feeling of being cast aside from all of what I had did for 7 years putting my own health at risk to help the rare disease community made me at first angry then sad. When asked by different organizations to join as an alliance member, or talk at a conference, or director of  a working group, or a liaison for another I helped out. Then to be ostracized by the community without a care makes me angry and sad all at once even now!

I have stayed on as a National Sarcoidosis Ambassador as well as RUGD Ambassador for Illumina, plus I have taken some small roles that I can do for other organizations at home, Savvy_Coop, Breakthrough Crew, and WEGO Health.

I won’t lie I know I am not always easy to get along with! When it comes to advocating I have an unusual way of doing things, always have and probably always will. I can say for the most part it has worked for me to raise awareness. My US Representative and Senators know me by name. They have helped me and done things for me that most haven’t done for others. My approach has always been, be straightforward with them and I expect the same from them. I will help them as long as they are straight with me. I have always tried to put the patients first. Not just myself but the whole community.

I still have a huge problem with how adults with rare diseases are treated in the community itself as well by . I will never stop expressing this fact. Please don’t forget that there are 30 million people who have rare diseases, of those 30 million 50% or 15 million are children, but the forgotten ones the other 50% or 15 million are adults who don’t want to die, who have a family that they are suppose to take care of, who have lost their jobs because of these diseases. 

I have many things I should be proud of. I know that. I have been nominated for advocacy awards as well winning Advocate of the Year by my Town. But one that is not why I have done this and two it is about the patients not me. Plus the Sarcoidosis community, has never wavered or questioned my intentions. I am so happy that the true community in which I started with has stood behind me and I know they have my back as much as I have theirs.

I am far from capable to do the things I was able to do just months ago and because being terminal I know I will be able to do less as time goes on. Those are just the facts. Does it stop me from being an advocate.. NO! Does it limit me… yes.. but you can still be an advocate from home. I can’t travel as much as I once did. As a matter of fact I can’t do a quarter of what I did before, but I know a quarter of me giving is still better than none of me. I am forever grateful for FSR and others for accepting me for who I am and not who I was. I will never be who I was! But I can be the best who I am now.

As to the “Why Me?”

I am not one to feel sorry for myself! Not in my Genes! I do have times when I think why did this happen to me? Why is The Sarcoidosis and the Parkinson’s having what my doctor told me as a “turf war in my brain, and I am the loser either way!” Why is my memory so bad now? Why are the migraines been going on for six months now with no stopping in sight?

Many people say I have a right to ask “Why Me?” Don’t get me wrong I do at times. I am one that deals with facts. I have three diseases that are killing me. That is something I can’t change. It is “The New Me!” Do I wish I could feel better of course, but there is nothing that is going to change that for now. I have to live in the now!

Right now I have to be the best person I can be, be the best family man, husband and father I can be, then lastly be the best advocate I can be now. Yes in that order! 

If I don’t take care of myself first then the rest doesn’t matter. Some people call it selfishness. I call it self awareness! It is something that I am not very good at or as I have been told before “I stink at!” I am trying to figure it out more now than ever.

I have learned that just because I have put myself first it doesn’t make me selfish. It makes me selfless. Why you may ask? Because I am not helping anyone if I don’t help myself.

I have been writing this blog not only for you and to show you what I have done, but most importantly for me to remember what I am here on this planet for. For a long, long time I have felt like I didn’t matter, like I am just here! Well I am here for a reason and the reason is to help others and by helping myself I can do that. I have changed my focus on life because life has told me to, but that doesn’t mean I care less or am not involved in advocating. It means I am doing the best I can, when I can, for as long as I can!!

I sincerely want to thank those who have been by my side with this and I don’t know where I would be without them!

Diana, my wife, my love, my best friend. I don’t know where I would be without you. You have been my rock, my life, my soul! I live for you! No matter what we have been able to handle things together! What a team we make!  I love you more than any words can say!! Your sacrifice to be with me is incredible. Your devotion for the things I do as an advocate is unmeasured. You are the best wife and person anyone could ever have!

Savannah, my daughter, my everything! You have been so amazing! You have inspired me to be a better father! You are the best! I live for you! You are and will become the best woman, more than I could ever imagined!

Debby, my counselor, but more important my friend! I have been able to go to you with anything no matter what, without fear of being belittled or feeling unimportant! I love you! What you have done for my family I could never repay you.

Isabella, my daughter, even though you were on this earth for 5 days you are always in my heart. You have taught me things I never would of known about myself. Thank you so much for being in my life forever!

Mom, you taught me so much! You are the strength in which I lean on. Even though you have been gone for 17 years you are only a question away. I feel you in everything I do. You have given me the strength to fight for who I am, what I am and for where I am right now. I always hope I am making you proud now and always! You have shown me what it is like to be a fighter! I love you now and forever!!

My Brothers and Sisters, you guys have helped me to be who I am today. Though I may have strayed away from you at times you are always in my heart! I love you all!

My Family, I want to thank you all for all of your patience even though I didn’t deserve it at times. I love you all!

My Mother in Law and family, you took me in and have taken care of me throughout my sickness. You have been there for my events and supported me throughout! I will always be grateful and love you all!

Kelli, my FSR helper but more importantly my friend. You have always been there for me when I needed to talk and just to bounce ideas off of. You are so amazing! I love you!

Cathleen, you may be my Vice President, but you are truly so much more. You are my friend, my confidant, my right hand person! Thank you so much for all of your help and support! I love you!

Kerry, you are amazing in everything you do! You are a very special to me and my family. I am so glad and honored to say you are my friend and co-Ambassador. I love you and Mike and your Mom, Iris!!

FSR Ambassadors, there are too many of you to mention. You are all so amazing! You are such an inspiration to so many and to me! Without all of you I know I wouldn’t be where I am now. My original FSR Ambassadors we made history! You are all family to me! Much Love To All of You!

Ginger, I remember when we both just started fighting the crazy battle against Sarcoidosis. I remember our first conversation. We just talked and you actually asked my opinion on how we can make the organization better. I love that we are always able to talk and that you have had my back! Love you!

Alesia, I love you! Your attitude towards life is nothing short of amazing! You are an inspiration! So glad to say you are my friend!

To Everyone else who has been there for me, Thank you so Much!

 

 

 

 

 

 

My Government Views

My Views of the State of our Country and Government. They are my opinion and mine alone!!

I know I am just a Patient Advocate but I have a unique perspective of the government, due to my 7 years of government advocating and dealing with all sides of the government. Since I have been downgraded from Chronically ill to Terminally ill, I have been home a lot more, but I have been dealing in full government advocacy. Yes you can still be an advocate from home. I have many connections from my time in Washington DC. They know I am a straight shooter and don’t hold anything back, but they also know that I am loyal to those who are loyal to me and I always have the PEOPLE in my best interests!

I just have to say a couple of things about our Government! I am totally disgusted by all parties of our government!

I am disgusted by our House of Representatives, while we are watching this Kavanaugh debacle, they are voting on TAX SCAM #2.”The Joint Committee on Taxation estimated that making these measures permanent would cost the government $630 billion in federal revenue over the next decade and also make all these changes permanent.” Give the rich more money take more from Medicare, Medicaid and Social Security Disability. LOOK AT THIS- “At the end of FY 2018 the gross US federal government debt is estimated to be $21.48 trillion, according to the FY19 Federal Budget” That does not count this new bill they are trying to pass! That is crazy incredible!

I am also disgusted at my own personal US Representative Lee Zeldin for lying to my face. I worked with Zeldin on many rare disease issues, and all the while stabbing me and millions of people in the back by voting YES on the Tax Scam Bill and also voting YES on the most recent Health care bill to come through the house. That bill makes it almost impossible for those with pre-existing conditions to get health insurance. That is the most ridiculous thing I can ever think of!

I am disgusted at the Senate for so many things! First and Foremost- GET A SPINE! ALL OF YOU! Many Americans would love you for it! This Kavanaugh debacle is the biggest disgrace in the government in all of my memory! It brought to head how DESTROYED our government is! Both sides are to blame and taking people down in the meantime and they don’t care! Dr. Ford went there yesterday to tell them about most likely the worse part of her life, being assaulted. What was the response from some of the Senators? We have Hatch saying she is beautiful and at one point of the hearing it actually looked like he was sleeping. Then you have Senator Graham yelling and demeaning her testimony and saying he will get revenge on the Democrats. Great! 99% of the committee had their minds set on the vote for Kavanaugh. Why bring her there? It was a disgusting horse and pony show!

If any of them cared they would of brought all of the people that were claimed to be there to the hearing. Yes they got a signed document saying they have no recollection. Anyone can sign a paper. Knowing that even though it is under law that nobody will call them for it.

Now with the Democrats . They should not be playing games either. They say they care about people but getting caught up in the same games that both sides are playing make you just as bad. You can’t be any better if you are doing the same thing as the other side.

Okay you all know how I feel about Trump. He ranks right up there as the worse people I have ever known. He has taken advantage of so many people, whether it physically, monetarily or mentally. He has made a mockery of the biggest job in the world, the US PRESIDENCY.
I have never seen the country and the world so divided in my 51 years alive. I am sure the Trump sheep will say ” No it was Obama!” No remember that Trump was the biggest “birther movement” talker to divide the country. Also we have our Great Senate Majority Leader and I quote ” We will make Obama a one term President.” So his cronies decided to make it miserable for him.

When it comes to Obama I believe he was trying to make too many people happy too many times. He was stymied but he let them do that to him also. When he came into office I know he had so many eyes on him being the first African American Descendant President. But he promised many things that he should of pushed back.
I am so tired of the government! I have been working with the government both Republicans and Democrats for 7 years and I never said I give up on them. I just know that it is broken so bad and yesterday just showed how broken it is.

I have one more thing to say. I am registered and independent. I have voted on both sides of the party. I vote for whoever I feel is looking out for ALL the people! Not just industry, or big money.

THE MAIN THING IS THAT PEOPLE ARE DYING, PEOPLE ARE GETTING KILLED, PEOPLE ARE GETTING SEXUALLY ABUSED, AND NOBODY IS FACING THOSE ISSUES!!!

WAKE UP EVERYONE!! VOTE! FIND PEOPLE WHO ACTUALLY CARE! STOP COMPLAINING AND DO SOMETHING ABOUT IT! YOU CAN MAKE A CALL, BE HEARD! ENOUGH OF THIS CRAP!!