Personal Life…

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

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!








Today I have been thinking about the word WHY???

  • Why don’t I have close friends?
  • Why do I have a rare disease and two other diseases?
  • Why do I keep seeing on Television about children having a rare disease but nothing about Adults still? Not trying to say anything against children but adults have rare diseases too.]
  • Why can’t anyone figure something to just help me feel a little better?
  • Why am I terminally ill? What happened? 

I will try to keep things in order, but sometimes that is not that easy for me.

I know I shouldn’t be complaining, but I will at times and today may just be one of those days! Many people have it worse than I do, I realize that. My life has been rough , but as hard as it has been I have been blessed. My Mother even though she was sick most if not all of my life, was AMAZING! I know she may had done things that weren’t “according to everyone’s right way” but she did the best she could and loved us unconditionally. I know for me there were no limits in subjects that I could talk with her about. I also have a family Diana my wife and Savannah that have been by my side for a long time and many patients don’t have that. Also I feel like my extended family is trying to understand, it is very hard to understand when you don’t see or deal with it regularly.

Why don’t I have close friends?

Now when it comes to friends that is a totally different story. I lost a lot of friends, but a lot of that was my own doing, I own up to that, but other friends I lost have been due to being sick. Most of the friends I have now are because of my sicknesses. My wife of course is my best friend! But if asked if I have another best friend I can honestly say right now I don’t think I could name a person. I am not saying it to be ” Oh Poor Poor Me!” I am just stating facts. I have some people I can trust and can talk to, but there isn’t that one person I could call and say ” Hey you want to go out for coffee?” Like I said some of it is my fault, but when you need that one person the most it stinks and hurts. I would love to go to the beach just for a little while but since I don’t drive that makes it tough. It is the little things in life! But it is very hard when you are terminally ill and can’t go out to make friends. Enough of the Pity Party! I love the friends I do have don’t ever get me wrong! This is a very common occurrence for chronically ill patients to lose friends, but nevertheless it is tough! I am not perfect! Never was and Never will be! I have done stuff I regret and probably will do again, I am human!

Why do I have a rare disease and two other diseases?

Now this question of course is rhetoric. I will never know why I have Sarcoidosis, I can speculate, but I will probably never know. Same as Sjogren’s Syndrome and Parkinson’s. So why ask this question? It could be why me? But not really! It could be God doesn’t give you more than you can’t handle, I am human I wonder about that. Was it something I did in my past? I never believe that for anyone or so many Great people wouldn’t of died so early.

So the reason I ask this is really what have I learned since having these diseases? There are many things. Some good some not so good.

I have learned who are the real people in my life! I have learned how strong I truly am! I learned I may not win this fight , but I sure am not going to lose either! When all is said and done people can say whatever they want good or bad, but I did things the best I could. Sure I would change many things but they made me who I am right now! Someone so passionate about not only about myself but most importantly others.

I have these diseases because it made me a better person! Sounds weird, doesn’t it? I am sure there are some who may not think that but I can’t please everyone, nor will I try! I wish many things are different, but I am here fighting for my life and many others the best I can. It is different than before, but now since I am even more of a homebody than before, I can only do so much but I still try. I won’t stop fighting for what I feel is right, no matter who it upsets if I feel it is the right thing to do for the patient. I can’t change that! Never mind can’t, I won’t!!! These diseases have made me a better person in other ways also. I don’t sweat the small stuff anymore! Why spend the rest of your life worrying about small things? Stressing yourself over why you can’t go here because you can’t afford it or someone does something small that bothers you is such a waste of time!

So I guess the reason I have these diseases is that it gave me a better concept of who I am!

Why do I keep seeing on Television about children having a rare disease but nothing about Adults still? Not trying to say anything against children but adults have rare diseases too.]

I know this is a very touchy subject. Let me start this off like I have before. There are at least 30 million Americans who have rare diseases. 50% of them are children. It is a sad truth that too many children have rare diseases, but don’t forget that 50% of rare disease patients are adults also. So stay with me on this one for awhile!

I have never tried to separate children and adults, but how many times do you hear about Adults with rare diseases compared to the children. I know it hits the heartstrings when people hear or see a child with a rare disease.

Do you realize how it feels to be an adult with a rare disease? What an impact it also has on family life financially, emotionally and mentally? I can only speak from my experiences. This part is not to sound like a victim, these are real experiences that I have been through.

I have been sick for a lot of my life, it started with simple things as extended ear problems, then it went to something more serious like childhood leukemia. When I had that I missed half of Kindergarten all the way to 4th grade of school. I could of and many times was told that they thought I wouldn’t make it through that. Boy were they wrong!! HAHA!! Why I put this in is because I know what it feels like to be a child with a severe illness. It was terrible! Blood transfusions, Chemotherapy, being in the hospital, or in a bed at home for almost 24 hours a day was like. The worse is that as a child you don’t understand what and why this is going on! I remember my Mom being sick herself trying to take care of me and all of the hardness and strength it took out of her and all of my Mom’s friends who were there to take care of me too.

As an adult who is sick guess what? You still don’t understand what and why this is going on, but on a totally different level. You know that you are sick but when you have a rare disease the odds are you don’t know how or why you got the disease. Then you also don’t have the understanding of what this disease is going to do to your body, especially when it comes to Sarcoidosis. Every patient has different symptoms. Then add on Sjogren’s Syndrome and Parkinson’s, IBS, Diverticulosis, Uevitis, Rheumatoid Arthritisand etc… it all becomes a complete mess!!!

When I was first misdiagnosed in 2004, I had a good job, good pay, steady employment wasn’t always worried about money. I had my daughter to take care of but that was fine. When I was misdiagnosed with cancer my whole life changed financially, physically emotionally and of course mentally. I was having a terrible time trying to maintain my job while receiving Chemotherapy and Radiation.

My health was a joke.. Not being able to hold down food, strength was next to nothing for days, then there was the little thing called loss of weight, I went down to 98 lbs. I honestly thought my life was over! Once again they and I were wrong! It was what I thought was the worse thing that would ever happen to me, boy was I wrong ( that happens to me a lot).

When I was finally diagnosed with Sarcoidosis I wasn’t too worried, after all Diana, my wife’s brother had it and he was fine after taking some prednisone, I can handle it. Well I was in for a rude awakening. I was diagnosed in April 2011. The best and when I say best I mean worst part of this was going to Mt. Sinai to find out that I received Chemotherapy and Radiation from 2004 to early 2008 for not the right reason. I was misdiagnosed with lung cancer the whole time so my travels with Sarcoidosis was going to be totally different than most people and just another jab to add in there was because I was misdiagnosed and my body was so weak I also found out I had Sarcoidosis in over 70% of my body by then. Now it is everywhere except my kidneys and liver. I can honestly say having Sarcoidosis is so much worse now than when I was misdiagnosed and on Chemotherapy and Radiation. That sounds crazy doesn’t it? How can that be? Very easy! When I was on Chemotherapy and Radiation it was helping a little by shrinking some of my masses.

Now we come to what is going on now! You see I guess I have been a medical anomaly for my whole life. I found out last April 2017, that I have Parkinson’s. Oh great! Just one more thing to for me worry about . Well comes to find out once again in 2011 I was diagnosed with Essential tremors. Wrong! It was Parkinson’s! Surprise! So I started using the Carbidopa-Levodopa and I thought “Hey this stuff is great!” It has helped so much with my shaking! I am on my way to do so much! Then slammed down again, I start to pass out… This is new… What is this all about??? Starting August 2017, I start to pass out for no reason at all. In total I have either passed out or fell for no reason at least 7 times in almost a year. Then more and more symptoms came about! I started having memory loss. At first I think “Okay I am 51 so you are going to forget things.” So I thought. I starting forgetting words, dates, times, full conversations and just some fundamental things. So my doctor is like okay let’s check your brain functions. It is called an EVOKE test. Well it came back as one of the worse on a whole if not the worse he has ever seen. I am like what does that mean?

When I received my results from this test and other neurological tests we found out that my long term memory is at 24% and my short term memory is at 17%. What a shock!! I knew my memory was bad but I didn’t realize how bad it is.

I was also told my cardiovascular and my motor function has declined terribly.

Then the BOMB came in! I was told by my doctor you have been downgraded from chronically ill to the dreaded words TERMINALLY ILL!

Since I have multiple illnesses that are attacking my brain, mainly the Sarcoidosis and the Parkinson’s, it is extremely difficult to decide which disease is causing what anymore. I had tried every Sarcoidosis medicine that is known to help, but not one has worked for me unfortunately.

There is a reason I went into detail about my health! I want you to understand what me as an adult has been going through. You hear on TV that this child has to go through this or that or that this person with Cancer has to go through this. But you hardly ever hear about an adult rare patient and what they have to go through daily.

I can barely walk, I can’t lift anything over 10 pounds, Most of my days are spent in bed, mostly sleeping. Something as easy as showering is a chore. So is getting dressed, wash up, and any other daily activity. Never mind me emotionally or mentally.

That is what I have to deal with can you imagine what my wife Diana, and my daughter Savannah have to deal with.

  • First off as a family we lost monetarily because instead of me being able to work I have to collect Social Security which is a joke. So we had to make some major financial cuts.
  • Then there is the physical aspect that my wife and daughter have to pick up in slack but also imagine being a wife or daughter and seeing you deteriorate in front of their eyes. My daughter was use to seeing this strong Dad picking her up as a child to run and play to someone who can’t go out hardly anywhere with her. Can you imagine not only the physical aspect but the mental and emotional scars it puts on my daughter. She has to wonder if I am going to be able to dance with her at her sweet sixteen this year, nevermind graduation or marriage. Can you also imagine that a 15 year old contacts me during school just to make sure I am okay? When she wakes up or comes home she makes sure I have eaten, or do I need anything. That is not how a 15 year old is suppose to live! The emotional and the mental aspect for a 15 year old to know her Father is terminally ill. Nobody talks about that do they???
  • Can you imagine what it is like for my wife who married me knowing I was sick, but I am sure she didn’t expect all of this. She has to be the bread winner, the stable and strong one no matter how she is feeling for my daughter but also for me. It is hard for her to ask everyday and 99% of the time I am saying I am not feeling well. She has to also be the one who drives around because I can’t. So when she gets home she doesn’t hardly ever get a chance to relax. Then if I can’t get out of bed she has to do take care of me. She has to do so much not just for me but also for my daughter. She has to take her around, buy her things because I don’t make enough money to do it for her and I can’t physically go out to do me, it kills me inside that I can’t be the “Dad” she deserves. To see what my wife has to go through physically and emotionally and also mentally is so tough. She tries to be the strong one but I know that she is hurting so much inside.
  • We have changed our whole lifestyle, due to this. We have changed when and how we go out. We have to try to take time for us, but when I go out it takes days for me to recover. So both my Wife and my daughter try to protect me and I try to be strong for them. So it is very tough to find a middle ground for all of us because there is no blue print for this.
  • Does anybody realize how hard it was for me as an adult who was a very physical and athletic person to go from a long distance runner to be someone who sleeps most of the day away? Can you imagine how hard it is for me emotionally as well as mentally for me to hear the words “You are terminally ill!” I still don’t know how to handle it.
  • This is why I believe there needs to be more of a discussion about adults who have rare diseases or any adult that has a chronic illness.

Why am I terminally ill? What happened? 

Ok once again this is a rhetoric question! But one I ask myself so many days if not everyday!  I know that I have reasons for being sick and that is to help people, but why terminally?

The best I can say is that there were flaws in my diagnosis and we all know that.  Also I truly believe I should of pushed more to find answers. Having not one but two misdiagnosis is crazy!

I feel I let myself down, but I also feel the medical field and the government failed me! I don’t want too push blame , but I do want to point out the obvious. I tried to get into five clinical trials, but not one accepted me. I also tried for compassionate use but the FDA wasn’t so compassionate to me!

I let myself down by not being more informed in the beginning and not being pushy enough to find answers!

In conclusion I highly recommend that you have to be your own best advocate! I wrote this blog because many people don’t understand my experiences with being a Rare, Chronic and now terminally ill. I truly hope I can help at least one person to understand how hard it is and also to let them know you will probably never have all of the answers. Don’t stress yourself trying to find the answers of WHY!! Just understand that things are what they are and try to make the best you can of whatever your situation is!

When I first starting writing this three days ago I was thinking this was going to be a complaining blog. As I kept going I now feel it is something we all go through. It is how you handle it that will decide your future!

I also know I don’t have all of the answers! I just write to honestly make people think and more importantly make me think!!!

I Feel Useless!!

What to do when you feel like there is nothing left?

I write these blogs to give you an insight into just one person who is a terminally ill patient. All of what I write is about me and not trying to speak for anyone else!

I am having many days in which I feel absolutely Useless!!! My body feels like it wants to give up on me but my brain is saying no not going to happen… I am wondering will I ever have a day in which I can do anything anymore. Yes I do things, but I am doing these things in spite of my body! If it was up to my body I feel it would say done… I don’t want to say I am giving up but what your mind and what your body says are two totally different things.

I am always tired, hurting and emotionally drained. More than usual now. I know I was downgraded from chronically ill to terminally ill, but I am not the type to give up and refuse to. I don’t want to be laying in bed everyday and doing absolutely nothing. I can’t! If I do I might as well just give up! Well I have given up before and don’t ever want to go back there.

I have been thinking about so many different things because what else do I have to do. I try to read I just give up. I listen to audio books and lose interest in minutes. I know I am just going on but I want people to understand what it is like to be me now!

I am having so many internal battles that I don’t know who or what I am anymore. My head is like you are better than you think but my body tells me you are terminal. How do I decipher what is what?

With all this being said I regret coming out that I am terminally ill. Honestly I wasn’t going to tell anyone, but didn’t know the NBC Nightly News put it up on TV for my whole interview. So there it was!! I feel that too many people are walking on eggshells with me. When I say I can or want to help it is because I want to help! If I don’t do what I do best I might as well GIVE UP!

I know people mean well and are trying to make sure I don’t do too much. But I don’t want pity. I know as a friend where do you draw the line? For me I know my body better than anyone else. If I can’t do things I will let you know. I really need a purpose in life other than just staying alive!  I have a great family and support system who I want to spend a lot of time with and they deserve that. But most of the time I am home by myself just doing absolutely nothing because I am stuck in bed and in too much pain to get out of bed.

But I don’t want to be useless! I don’t want to think there is nothing left for me to do!

Instead of being suicidal, lately I am just very aggravated! I am not adjusting well to my new normal. Why? Because my new normal is not a good normal!! It is a normal in which I am told that you are dying. It is a normal in which my body just says lay here. I know I need the rest but is it really rest when your mind won’t stop and you feel like why am I even here?

I am not an ego person but I feel like I am not needed anymore. In all aspects of my life! It is not anyone’s fault but it is me just going from being busy to doing absolutely (well hardly) anything. When I was diagnosed with Sarcoidosis I knew it was going to be rough but I had a purpose. Right now I really don’t know what my purpose is??

I know my family needs me and wants me as I do with my friends but it is really tough to go around life when you feel you have no purpose.

Yes this is a form of depression. I know that! But this is different from any other type of depression that I have ever dealt with. It is hard to talk to anyone including my counselor. I can talk but when I get asked how can I help? I don’t know how to answer this! How can you ask for help when you don’t know how anyone can help?? It really is a tough situation to be in. I really don’t know who I am!!

I figured I needed to write this more for myself than probably anyone else. I am in a place I never thought I would be!







This is going to be a long post! Because this hits home to me and many others!

If you or someone you know is contemplating suicide, call 1-800-SUICIDE (1-800-784-2433) or 1-800-273-TALK (1-800-273-8255).

What happened with Kate Spade can happen to anyone. Depression in America affects over 19 million people. It can happen to anyone. Please don’t ever take it for granted that someone is going to be fine. Learn the signs, learn what it can do, learn what can cause it because there can be an underlying cause. Take it seriously in others and in yourself.
One thing about depression and suicide is that you may not see that someone else may have it or be thinking about it. It has become an epidemic:

According to the American Foundation for Suicide Prevention (AFSP), over 44,000 people try to commit suicide each year in the United States. In 2015, suicide was the second leading cause of death in people 15 to 34 years of age and third leading cause of death in children aged 10 to 14, according to the CDC.

Men are four times more likely than women to kill themselves, and 77 percent of U.S. suicides are completed by men, the CDC said. This disparity is partially due to men choosing more lethal means to kill themselves: 56 percent die by firearm. Women are more likely to attempt suicide by self-poisoning.

“Women more likely to attempt suicide, and men more likely to complete [it],” Campo said.

Why Do People Attempt Suicide?
A suicide attempt is a clear indication that something is gravely wrong in a person’s life. No matter the race or age of the person; how rich or poor they are, it is true that most people who die by suicide have a mental or emotional disorder. The most common underlying disorder is depression, 30% to 70% of suicide victims suffer from major depression or bipolar (manic-depressive) disorder. [1]

Warning Signs of Someone Considering Suicide
Any one of these signs does not necessarily mean the person is considering suicide, but several of these symptoms may signal a need for help:

Verbal suicide threats such as, “You’d be better off without me.” or “Maybe I won’t be around”
Expressions of hopelessness and helplessness
Previous suicide attempts
Daring or risk-taking behavior
Personality changes
Giving away prized possessions
Lack of interest in future plans
Remember: Eight out of ten people considering suicide give some sign of their intentions. [2] People who talk about suicide, threaten suicide, or call suicide crisis centers are 30 times more likely than average to kill themselves. [3]

If you or someone you know is contemplating suicide, call 1-800-SUICIDE (1-800-784-2433) or 1-800-273-TALK (1-800-273-8255).

I have been dealing with Depression for many of years most of mine has to do with my health but other times it is due to anxiety and stress.

I have been on the deep end of depression too many times I would like to admit. It is a never ending battle!

I have said on many occasions that people would be better off without me! But the truth is the people who truly care about you will be affected in more ways than you or I can imagine.

I am so lucky to have a great support system! I have a great wife, a wonderful daughter family that cares. and just as importantly I have an amazing Counselor!!

I have had some real trials and tribulations in my life, some self done and some that happened to me. I am learning that this is just part of life. This doesn’t define me!

I have even thought about committing suicide! Yes people who seem strong get weak too!!

I wanted to post this because I have been dealing with so much lately that I sometimes I forget about what I am doing also. Depression has been in full force since my terminal diagnosis. I am fighting everyday with myself. Right now I hope I am winning. I guess I will never know!


Right to Try

My view on Right to Try:  PRO Right to Try.

This post was not made because of any political view at all. I hope it doesn’t get caught up in the political climate that is out there.

I never want anyone to have to go through what I have been through! I have been on different sides of this debate but when you don’t get approved for 5 clinical trials ad Compassionate Use wasn’t so Compassionate to me. I also hope that nobody has to sit in the doctor’s office and hear “I am so sorry but we don’t have any other medicines for you, like I have done. The words you are terminal is something I never wish on anybody!

I am writing this so hopefully nobody else has to hear I am so sorry but because you have 3 very active diseases I doubt any experimental medicines will work on you. So as you can see I am not for Right to Try for me. I am fighting so there wont be too many more like me! I am also not writing  this for pity, NOT AT ALL!!! I want people to hear and ACTUALLY LISTEN to what a patient has to say!!! Stop thinking you all know better for me then I do!!!

I am Pro for many reasons.
My first reason is that I don’t believe that someone who doesn’t know me should decide whether or not I should be able to try a clinical trial or drug that may have a chance to save a life of a patient especially those that are terminally ill. When there is a chance to help someone who is terminally ill they should be able to. The way that clinical trials go now they can take up to 7+ years just to start a clinical trial that patients are involved. Most terminally ill and chronic patients don’t have that much time to wait.
Another reason I am for it is due to my history with the system . When doing a clinical trial right now the pharmaceutical companies are only going to take the perfect person who fits the trial. So many people are denied because they don’t fit the criteria because the pharmaceutical companies need the best results so the FDA will approve the drug. With the Right to Try bill terminally ill patients have the chance to try the same medicines that are in the trials, first of all earlier, they can get into the trial after the FDA approves the first level instead of waiting for the third FDA level of approval.
Another great part of this bill is that if a terminally ill patient goes into a trial it doesn’t affect the trial results.
Why I feel that this will help the Sarcoidosis community is because there are only two approved drugs for Sarcoidosis, prednisone and acthar gel. Neither is a cure and at best only suppresses the inflammation plus the side effects of those medicines are almost as bad as the medicine itself. Also because Sarcoidosis attacks any part of the body the two approved medicines don’t help all those parts. In the past 18 months over 50 Sarcoidosis patients have died. If they were allowed to decide if they wanted to try a clinical trial drug for Sarcoidosis, maybe some of those patients might not have died. Even if it saved one person then I believe that it is worth it.
I know that other Rare Disease Organizations were against this bill because they believed that it would give people false hope. I understand that but I feel they are underestimating the patients, doctors and the families. I believe that each patient should know the risks of each trial and either the patient or the family or caregiver should have the chance to say yes or no. Even if they make a rush decision that is up to the patient who is terminally ill. Also when a patient is terminally ill they don’t have many or any other choices. Are they suppose to just give up? I am a terminally ill patient and I refuse to give up.
The medicines that are being offered after the first level clinical trials still have to be approved by the FDA to get to the next level. So these drugs or treatments are at least initially approved by the FDA.
To wrap up I know as a terminally ill patient that I would investigate the treatment first to see if the benefits will outweigh the side effects or negatives. If I feel that it wouldn’t help me I wouldn’t use it and I truly hope that the patients, caregivers and most importantly the doctors research any trial medication before giving it to a patient.

I have always said it is never too late to have HOPE!
Personally I have a wife and daughter to live for. My daughter is turning 16 in December and I want to see her sweet sixteen, her graduation, go to college and see her get married. I will not just roll up into a ball and give up. I have always been a fighter and always will be.

Here is an article that I am in on my stance on Right To Try:

Here is my NBC NIGHTLY NEWS INTERVIEW on Right to Try:


Today… What does one of those days mean to you??


Well let me tell you what “One of those days” mean to me….

Today sadness has been my friend. Depressed that my life is changing. I know I shouldn’t be putting this on my blog. But this is part of life… MY LIFE!

Life is always changing… Well change is not always easy too! I am adapting to the NEW ME!

Will I be able to accept this I don’t know. I do know I have said I am adaptable, but I need to really look to my inner self and say “Are you ready to adapt?”

I think I am…. I hope I am!!

I love life even with these diseases I have. I learned to love life!

Just been very hard to know you want to do things but aren’t physically able to do them.

I have taken many steps back, for the better of my health. It has been the hardest decisions I have ever made since finding out I have Sarcoidosis…

I am fighting an inner battle to figure out my strength. I know it is there just have to find it again!

Just know I am always with the Rare Disease Community and will pick my battles. If I do step back from certain events or fights it is only because I need to get better.

I need to have an internal peace… I can honestly say I don’t know what that is! But I am looking for ways to get there.

I will leave it with this:

My new phrase is: ” I AM SCARED, BUT I AM TRYING!” That is all I know how to do!

My Sarcoidosis Story

You get that call you feared. You have cancer. Hours go by. You decide how you’re going to tell your family. You research treatments and statistics. You start to wonder if you’re going to die.

This was a reality for Frank Rivera.

In 2004 he started having breathing issues and couldn’t walk for any amount of time. He was also experiencing severe cough and pain in his lungs. After a biopsy showed lumps in his lungs his doctor would diagnose him with lung cancer.

Frank would later find out this was a misdiagnosis and would spend the next 4 years battling cancer he didn’t have, and enduring other medical complications due to the error.

“I received courses of chemotherapy and radiation. The treatments took their toll. At one point I weighed a mere 98 pounds.” Frank said.

In April 2011 an oncologist surgeon at Stony Brook Cancer Center in New York State correctly diagnosed Frank with a disease called Sarcoidosis.

According to the Foundation for Sarcoidosis Research (FSR), Sarcoidosis is an inflammatory disease characterized by the formation of tiny clumps of inflammatory cells—called granulomas—in one or more organs of the body. This disease is difficult to diagnose, and many patients suffer for years before arriving at the correct diagnosis.

Throughout his life Frank has witnessed the toll medical issues can take on a family.

When Frank was in kindergarten he was diagnosed with Childhood Leukemia in which he missed half of kindergarten through half of fourth grade. He would also end up in foster care after his mother had major heart surgery, 1 of 8 heart procedures she would have in his youth. It took a year until she was medically cleared to take care of her children again, but it wasn’t the last time Frank would spend time in foster care due to his mother’s medical condition.

He knew he was in for a fight.

In 2009, Frank met his now wife Diana online and moved to New York to be with her. He worked as an office for manager for a few years before owning his own concrete sealant distributor. In 2010 he learned that Diana was pregnant. Their daughter, Isabella Joy Rivera was born prematurely in January 2011. She died after a five days.

“It broke our hearts to the core. That was the hardest thing I ever dealt with, more difficult, even than being sick.” Frank said.

Frank said the difference between losing a loved one and watching someone you care about suffer, and being ill yourself, has to do with control. When he is sick, he feels that he has some control over the situation. But there is nothing worse than not being able to help a baby, your baby, born with no defenses. That is a feeling of total powerlessness, he said.

A few days after his daughter’s death Frank was back in the hospital for lower abdomen pain. After x-rays and CT scans the doctors told him it was his IBS acting up. He would return a few weeks later with the same stomach problems, as well as breathing problems. This is when Frank would find out he has Sarcoidosis.

The cancer treatments on top of the new medication Frank was taking to treat Sarcoidosis left him in the hospital for 25 days in late 2011. He would have his gallbladder removed along with a foot of his colon.

“I was on 40 mg of Prednisone as well as Klonopin and Mysoline for the tremors, Zoloft for depression, Protonix for the heartburn, and Advair for the lungs.” Frank said.

In 2012 Frank had another surgery to remove his colostomy bag. A few weeks later his colon ruptured, and he ended up with sepsis. The doctors told Diana that he had a 33% chance to live. He was on life support for 3 days during which the doctors reconnected the colostomy bag. When Frank woke up with a smile, the doctors told him it was a miracle he was alive. He would later have surgery for incisional hernia making it six surgeries over three years.

Last year (2017) Frank was diagnosed with Parkinson’s Disease.

Patients with Sarcoidosis can experience other complications associated with the disease and medicines according to FSR. Sarcoidosis is classified as an inflammatory disease, though it takes on many other diseases symptoms. This makes it difficult for doctors and researchers to determine the cause and produce a cure.

Recognizing through his own fight that patients need to be diligent in their own care by keeping up to date with new medications, treatments, and research, Frank started Sarcoidosis of Long Island nonprofit.

“We fight for those who can’t fight for themselves.” Frank said.

Sarcoidosis of Long Island is an advocate organization that works with local county, state and national government officials to gain recognition and raise awareness for the disease, according to their website (

Frank said starting the nonprofit was tough, but worth the challenge. He said that even if they can help one person it was worth it.

Frank’s organization has had three Sarcoidosis 5k Fun Runs, a movie fund raiser, and a Friendly’s Dinner fundraiser. Their 5th Annual Sarcoidosis of Long Island Awareness Walk is on April 20, 2019 in Mount Sinai, NY. The event is held in conjunction with walks all over the world supporting Sarcoidosis patients and research.

“I want everyone to know that no matter how hard this disease has affected my life, I will keep a smile on my face. Even though I am on disability, I know that it may have changed my life, but it won’t run my life. I refuse to give in to this disease. There are days where I cry and ask, ‘why me’. I just answer myself by saying God only gives you what you can handle.”

Through his organization Frank has worked with the state of New York to get a resolution passed making April Sarcoidosis Awareness Month. He has received a letter from President Barack Obama for his hard work and dedication and is working on a federal resolution with Senator Chuck Schumer to make April Sarcoidosis Awareness Month on a national level.

In 2016 he hosted the event A Day for Rare Diseases. The event featured speakers from all different aspects of the rare disease community including government officials.

Frank is currently working with Stony Brook University Hospital in Stony Brook, NY to host another Rare Disease Day. The event will help raise awareness for the 7000 rare diseases.

Frank has received several acclamations for his individual work and work through his nonprofit.

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 four awards by WEGO Health partners, Patient Leader Hero as well as Best Kept Secret. 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.

Frank turned 51 last year. He said what defines him is his strength to carry on, and that Sarcoidosis is what he has not who he is. His mission in life is to help others that have diseases where on the outside you look fine, but on the inside the pain is unbearable.

“As I turned 50 I realized how much my past has made me who I am. It’s why I do what I do. I am a fighter. I am here because I am a fighter!” Frank said.

“I was told many times I wasn’t going to make it, but here I am.”

Frank said he owes it all to his mom. Watching her endure all the medical procedures throughout her like taught him to always fight. She was sick for most of her life and fought for Frank and her family.

Frank lives this every day.

Mental Health for a Rare Disease Patient

Hey all! I am writing this to show you my mental health journey!

I have been dealing with mental health and depression for a long time. Not just due to my Rare Disease conditions but due to life. Many people don’t know that about me.

You see me smile and being happy most of the times but for the most part that has been a defense mechanism for me. I am not always depressed, but I fight depression almost every day.

A little background on me is that I have been sick in so many different parts of my life. At the age of 5 I was diagnosed with childhood leukemia which kept me out of school from half of kindergarten until 4th grade. It was tough not being able to do things because you are tired. It did make me a smarter person though, because in that time I read (I am dating myself here), The World Book Encyclopedia from A-Z, the 1972 edition. Yes I am an old nerd!

I don’t say much about my childhood, because I was always told not to use it as an excuse. I don’t use it as an excuse but more as this is what brought me to where I am now.

I went through some rough things as a child:

  • My Mother was sick with Heart problems for as long as I can remember. She had over 8 or 9 open Heart operations. We were told too many times that she wouldn’t make it through the night. I remember one instance in particular that in 1975 my grandmother was told in front of my mom by the doctor that she wouldn’t make it through the night. Well the next day came and my Mom woke up and told the doctor to “F” you. I tell you about this because now you know where I get my fight from!
  • When living in Amityville NY, our house was robbed multiple times. Can you imagine being in the house being able to see the robbers then hearing your Mom scream because one of the robbers cut your Mom’s face? Well I can believe it! It is one of the worst scarred memories of my life.
  • Because my Mom was so sick our family, the children, had to go to foster care for a couple of years. My two older brothers went together to one house and My younger sister and I went together in different homes. The first home was very abusive, mostly mentally. I was locked in a room for 30 days straight, even though at the time I was still sick. There was more but out of respect for my family I won’t go into details. That may have also something to do with my inner strength.
  • We have fought as a family to move forward and get to where we want to be.

Some really great memories:

  • My Mom coming home from the hospital all those times! Especially when she was able to take us back from the foster home for good.
  • Moving to Centereach NY and playing all the time outside. We played so much sports. I loved being able to play sports with kids older than me and keeping up.
  • Starting to run for Centereach High School. So many great memories and being so competitive I loved beating people.

Now let me talk a bit about me and depression!

I have always been the strong one! I hardly ever show me feelings. I have to say I have been better with this now. Took me a long time to open to people. I thank my Counselor Debby for that, as well as my wife Diana.

I have always been smiling as a defense. I always really gravitate to the song “Tears of a Clown” by Smokey Robinson. That is me to a tea!

For a long time instead of facing my past I ran from it. Now that I face it more and more, I have realized that there is so much I have blocked out in my childhood life. Especially being sick as a child.

Now back to more current things.

I had to move away from my daughter in Oklahoma because her Mom’s family threatened my life even pointing a gun in my face. I kept in touch then her Mom’s family ran away from me. The only way I found out was looking on Google. Took me 4 yrs to get custody of my daughter. There was a lot of depression due to that. I really can’t go in depth but do know the depression was at the highest ever. I felt like I let my daughter down.

When I was diagnosed with “Cancer”. I went through a rough time, dealing with being constantly dealing wit the side effect of chemotherapy and radiation. I remember crying by myself while throwing up for days and not being able to eat. I remember going down to 98 pounds and just always being out of energy but trying to work through it. I never did have anyone to talk through this time. At least I had my daughter Savannah to keep me going!

So when I was told I was in “remission” I moved back to New York and moved in with Diana. All looked great! Diana got pregnant and we were having a girl! In January 3, 2011 we have a beautiful girl named Isabella, very premature. We were told she wouldn’t make it through the birth. She did! We were so happy! We knew we were in for a fight but fight she did. She fought for 5 days so hard but wasn’t able to fight anymore! The devastation of loosing our child can’t be described. It was so heart wrenching and brought up many internal problems for me.

At the end of January 2011, I ended up in the hospital with stomach problems. While there an X-Ray showed I had masses in my lungs. I was so devastated that I thought my “Cancer” came back. Low and behold it was a disease called Sarcoidosis. So now this started my ride of my life!

Due to Sarcoidosis being misdiagnosed as cancer for 7 years I wasn’t treated for it. Because of that I have Sarcoidosis in over 80% of my body! The pain caused by Sarcoidosis is so intense that I live with a pain tolerance of 7 every day. I have had 9 operations due to this disease including coming within inches of losing my life. In April 2012, I ended up with a hole in my colon with Sepsis in my whole body. I went in surgery on Monday morning and I don’t remember anything until the following Thursday. I was incubated that whole time.

With the disease about 2 1/2 years ago I was told they don’t have any more medicines to help me out with Sarcoidosis. That put me in a slide to where I contemplated suicide on too many days. So I was at least smart enough to ask for more help. I signed up myself in for a 72 hour watch in the hospital. The best decision of my life.

I felt like I was a burden to my wife and my daughter and they have been through enough of me weighing them down. I am on disability and we lost so much in salary as well as lost so much freedom because we didn’t know how I was going to feel each day. I was losing friends, I was losing me!

I know it is tough to do but it saved my life! To this day I still see a counselor and fight depression everyday.

I won’t lie as I write this my depression is at a very high level. So much stress of trying to please everyone but forgetting about me. I have had 2 mini strokes in 6 months. I was told to cut back my advocacy. It is something I love to do. Not just for me but to help so many others that deal with what I do on a daily basis.

I have been crying a lot more lately because things are setting in. Being told that it is not if but when I will have another stroke, but will it be mini we don’t know. Also the constant feeling dizzy and double vision has been very hard to deal with. I know I am not doing well and am not getting any better. It is a realization that is so tough to face. Mortality is something we never want to deal with but guess what? It is there!

Then to hear that you are even more limited is very tough!

I am always fighting battles everyday! The battle internally, the battles of people saying you look great, then the battle of people not believing you!

I am trying to fight for my life! I am truly trying to fight for others but I am really am fighting for my real life!!

Am I winning? I don’t know!!


My Rare Life Story

A view of a life of a Rare Disease Patient from the Patient’s perspective.

My Rare Life story:

I know this story is long but it really gives you an insight of what I have been going through during this odyssey called Rare Life!
I just write with no structure but with things that come to mind. So if you are looking for structure you are going to have trouble with this.. HAHA!

This is an ongoing report of my life as it happened… Please bare with me!

Hello my name is Frank Rivera. I am 51. My story actually goes back to 2004. While in Florida I was found to have multiple lumps in my lungs. After a biopsy they told me I had lung cancer. That rocked my world; I thought life was over for me. In the meantime I ended up moving to Oklahoma and getting chemotherapy and radiation for almost 4 years. I was down to 98 pounds at one point.

In 2009 I ended up back in New York.

Well my fiancé at the time, now my wife, Diana got pregnant and was due to have the baby in April of 2011. Well unfortunately Isabella Joy Rivera was born in January 3rd due to complications after only 25 weeks. She was too premature and passed away on January 8, 2011. It broke our hearts to the core. That was the hardest thing I ever dealt with, including me being sick. At least when I am sick I control me, there is nothing worse than not being able to help your baby to live!

I didn’t even have enough time to mourn her passing, because on January 23, 2011, I went to Mather Hospital for lower abdomen pain. And they took X-rays and CT Scans. They told me it was my IBS acting up. Well in April of 2011, I went back to the hospital, due to the same stomach problems, as well as breathing problems. According to the Dr. there he asked me if I knew I had 2 lumps in both of my lower lobes in my lungs since the January visit. I was shocked thinking my lung cancer had reappeared. So I went to an oncologist surgeon who took a biopsy of my inflamed lymph nodes and found out I have Sarcoidosis. I was like what is that?? I never heard of it. Well little did I know what kind of roller coaster I would be on since?

I also found out, by Dr Padilla of Mt. Sinai Hospital, I was misdiagnosed about the lung cancer in 2004. I was first diagnosed in my lungs and lymph nodes and it grew into my neurological system, then in my eyes (uevitis), then it has attacked my gallbladder, which I got removed in July 2011. Then since the only approved medicine for Sarcoidosis is Prednisone, they put me on 40mg (steroid) it started to eat away at my colon. Between that and my Irritable Bowel Syndrome and my Diverticulitis, in October of 2011, I was in the hospital for 25 days before I had a resection of the small colon. They removed about a foot of colon. All the while I was still on 40 mg of Prednisone as well as Klonopin, for the tremors, Zoloft for depression, Mysoline also for tremors, Protonix for the heartburn and Advair for the lungs and Naproxen, which I never should have been on due to my bad stomach and colon, for the arthritis.

In April 2012 I went back into the hospital for abdomen cramps to find out the my colon ruptured and I ended up with sepsis. I almost died, was told by my wife that they said I had a 33% chance to live. I was on life support for 3days and don’t remember those days at all. I had a colostomy bag put on me. When I did wake up the doctors told me I was a miracle to be alive. I only remained in the hospital for another 3 more days. They decided to taper my Prednisone to 5mg and took me off of the Naproxen.

In May I got I got a new rheumatologist and he put me on 15 mg of Methotrexate, then 20mg, and Remicade, and physical therapy due to the Sarcoidosis arthritis. In October 2012 I had another surgery for the removal of the colostomy bag. Now I have to deal with the colds that the Methotrexate, which is a chemotherapy pill, which makes me susceptible to other colds and also the upset stomach.

I received another surgery in August 2013 for an incisional hernia. They ended up putting a mesh in by my hernia.

I just want to let everyone know that no matter how hard it has affected my life, I will keep a smile on my face. Even though I am on disability, I know that it may have changed my life but it won’t run my life. I refuse to give into this disease, don’t get me wrong there are days where I cry and ask why me. I just answer myself by saying God only gives you what you can handle. I use a cane now and then but that doesn’t define me. What defines me is the strength to carry on. Sarcoidosis is what I have not what I am! My mission in life is to help others with diseases that on the outside you look fine, but on the inside the pain is unbearable.

In December of 2013, I ended up having another surgery to fix the mesh of the hernia so that makes a total of 6 surgeries in 3 years. But I am still here kicking and fighting.

My Sarcoidosis thoughts continued:

As I live and move forward with this disease. I sit here this morning thinking about this disease, Sarcoidosis, there are many people with Sarcoidosis that do get many other problems, some are associated with the disease then some are associated with the medicines. Sarcoidosis is classified as an inflammatory disease, though it takes on many other diseases like symptoms. That is what makes it so difficult for doctors and scientists to get a hold of the cause and cure. We as people who have Sarcoidosis have to be diligent in our own care, by keeping up to date with the medicines, and new ways to combat this terrible disease. We have to be our own doctors and learn to not just accept everything a doctor says is always right. Don’t be afraid to ask for a second or a third opinion until you feel comfortable with your doctors and your care. Each one of us “Sarkies” need to control your own care by being aware of your care and what your body needs and how it feels.

One thing that I feel as a Sarcoidosis patient is that us as a “community”, maybe not one that we wanted to be part of, but we are, need to gather together instead of everyone having their own agenda. We all have a disease that effects everyone of us in a different way but it still is the same disease and there are many ways we could work together to get funding and acknowledgment that this disease needs. We need to get our priorities together to help those that really need it. I am not saying you don’t need it but there are many people without insurance and basic medicines and can’t get a simple X-Ray or CT Scan. I know that I am not perfect and will never be, but I do know one thing. I would do as much as I could, legally, to help others. I am not trying to put myself on a pedestal, but us as a “Sarkie” nation, which many of us do, need to get together and get this whole movement working together. We are all in it for the right reasons, now let’s keep the momentum going so we can all get this disease controlled and then see it go to the waste side.

I want everyone to know that I DO LOVE YOU ALL. I am sure some of you may doubt that and even doubt my ways of fund-raising and advocating. We all have our own ways and we are all determined to get it done, that is why we are stubborn, otherwise we wouldn’t be doing this and fighting this disease.

A couple of things I wanted to say before I close this note! Don’t be afraid to be afraid; don’t judge people for how they react to the disease also. Each person is different and has different symptoms and pains and aches. The best thing I could tell anyone who has any type of disease. Your mind has an amazing power! It will either help or hinder your success or failure. Your mind is 90% of your recovery. I know from personal trials and tribulations that if you don’t think positive and give up your body will follow. It is always easier said than done, but if you can’t do it alone don’t be afraid to go out and get help. There are many places that will help for cheap or no money for that matter that will counsel you and help you. Don’t think you are weak if you are talking to a counselor. If anything it makes you stronger to realize you can’t do it all by yourself.

Another thing is your family. You have to remember not everyone understands what you are going through or will ever understand. Family may not be blood. It can be even a stranger that you can talk to who understands and doesn’t judge you. I personally also think a family member or friend should be able to kick you in the butt sometimes, but must understand that sometimes for a patient “No means No.” But as patients don’t take your disease as a death sentence and also don’t think that every pain means something new is going on and is related to your original diagnosis. Sometimes it is what it is. Learn our body!! Know its quirks, pains, aches, instabilities.

I wrote this just because I hope it may help one person! If that happens I will be ecstatic and will know I made a difference in someone’s life! I am always just a message away if you need me! My email is If I don’t get to you right away it doesn’t mean I am ignoring you. Most of the time it is because I like you are dealing with the same things and insecurities you are going through.

As of right now I am dealing with a bout with Bronchitis bordering on pneumonia so back on the steroids I go for a Blast hopefully only, but 3 days into it I feel the same or worse. But I can’t spend my life in bed. I am staying in the house as much as possible but I might as well be in the hospital if I have to stay in bed all day.

I started this Non-Profit group called Sarcoidosis of Long Island. It really has been a tough go at it, but worth the challenge. If we can help just one person than it has been worth it. We have had 2 Sarcoidosis 5k Fun Runs, A movie fund raiser, and a Friendly’s Dinner Fundraiser.

We have received proclamations from the Town of Brookhaven, the County of Suffolk, our State representative, and US Representative as well as US Senator Charles Chuck Schumer. We also have a support group for the locals. I am proud that a man who on April 2012 had a slim chance of living has gotten this far. There have been setbacks but you roll with the punches and get back up again and start again. Lately the “flare Ups”, Sarcoidosis flare ups are very tough, it is in my lymph nodes, lungs, neurological, arthritis, eyes, GI system, skin. Add to that IBS and good old Diverticulosis and it is so much fun. But all in all I am alive thanks to God and my wife Diana and her family and as well as some of my family members and friends!!!

Just an update to all that want to know… This winter has been extremely tough due to the cold and snowy weather. I have dealt with many different issues including my stomach pain- another hernia that they won’t do surgery on because of the other problems, flu,- had a terrible case of it that came back, bronchitis, and they took me off Remicade because it wasn’t working and my arthritis and joint pains got worse. They are going to start me on Humira and see how that goes. I went to an allergist and found out I have environmental allergies. Started on allergy shots but had a terrible reaction on them, so bad they had to give me 40 mg of Prednisone. So no more allergy shots. I also have to get hearing aids for both ears! Fun! Just another day in the life of a Chronic Sarcoidosis patient.

Good news is in April, Sarcoidosis of Long Island is going to be working with The Town of Brookhaven for a walk through Beautiful and Historic Stony Brook on April 25, 2015. It will coincide with Foundation of Sarcoidosis Research 5k walk/run for Sarcoidosis Awareness Month. We also will be going to a Town Hall Meeting on April 16, 2015, where I will speak to the Town Hall and The Town Hall Council members will be wearing Purple for that day in April. We also had Council member Valerie Cartright at one of our support group meetings. She was amazing and is partnering with me to raise awareness for this dreaded disease.

July 14, 2015- Thank you very much Rachel Platten for your song “Fight Song!” It has inspired me so much lately!!!

Here are my thoughts lately of my disease, Sarcoidosis. I have been very angry over this disease. It has been a roller-coaster of emotions, physical and mental items. Let’s just say not all is bad. I have had some real good things happen to me on the personal level. Now on the medical side it has been tough. My neurological issues seem to grow and have made me scared but also weary of what is Sarcoidosis related and what isn’t. With this disease you never know if the Sarcoidosis has taken over or if it is some other medical problem. All I know is that it makes it so difficult to understand what is going on with my body except that something different is going on, dizziness, muscle pain, memory loss, and other things. I am also very angry because ten people I knew that had Sarcoidosis has died very recently. One of these people was an activist for the Sarcoidosis cause, Andrea Timmons. She was the first person I talked to online about Sarcoidosis and we talked so many times on the phone when I was in the hospital or when she was. I will never forget Our Lady Bug!

I am frustrated at the government aside from my local government, Town Of Brookhaven, and Suffolk County, but my state, and the federal government seems to just ignore it. How many people have to die before someone wakes up!!! Sometimes I feel like I am fighting a losing battle, but I know I will never give up fighting because if I give up then what do I have left with my life. I love to help others and hope we keep getting bigger so we can make more of a difference. We do have an Andrea Timmons Sarcoidosis 5K Walk on August 29, 2015. We are really getting some support from the local NY sports teams as well as Karen Duffy, actress, and also a fellow Sarcoidosis patient. We are also getting local sponsors that have been great. I will list once we get them all! We are trying to work with the local 9/11 First Responders who have Sarcoidosis also due to the high heavy dust from the area. We are also trying to work with media people to get coverage also. I really want to make a splash to raise awareness and help many people who can’t afford medicines and cost of living.

On October 5, 2015 I was picked to go and speak in front of Congress. One of 7 great people. It was a great experience. Since that day I want to help everyone, but I know I can’t. I am always in pain and don’t see that changing. But oh well!!! I really have learned in the past couple of weeks how bad my Sarcoidosis really is, when I tried to do some easy things that I could do easily when I was healthy. Makes for a depressing time!!! It was so depressing, that I had bad thoughts. After all the tests, I have been diagnosed with Sjogrens Disease. All of these diseases are related somehow.

I am changing my medicines when I get back to fight off another disease. It keeps on piling on. It brought me to a very dark place. One that I never thought I was going to climb out of it.

Recently my kidneys are leaking proteins, either my liver or bones are leaking enzymes and I have a heart murmur. So I don’t know how much longer I can fight for everyone, so each day I try to fight my best. Now I am honored to be going to Washington DC for the EveryLife Foundation for Rare Diseases Congressional Annual meeting on November 4, 2015. I am the only one from Long Island and the only one to represent Sarcoidosis. It is a networking meeting to meet up with Senators and Legislatures followed by a gala. This is huge for Sarcoidosis because we can get some government momentum about the needs of Sarcoidosis patients and the need for information and acknowledgment of a rare disease.

Time to update some more. I have been told by my PCP that it is time to go back to Mt. Sinai Sarcoidosis Clinic. My disease has advanced to a point that my other Doctors are running out of options. So it is time to go back to the experts. I am hoping that they can really figure out what is going on with my body. The pain is excruciating, on a scale of 1-10 I am living in the 8 zone. But on the bright side, My county Legislature Kara Hahn is going to help raise awareness in Sarcoidosis. Also my US Representative Lee Zeldin is going to help me raise awareness on the federal level. Also FSR and I should be working together with others to try to bring all of the Sarcoidosis groups together so we can send out one message to the government. We will get it done!!!

January 7, 2016- More updates for the New Year! Our county Legislature Kara Hahn is really helping me with a new project that we hope will be so cutting edge for our disease. We will have a Seminar class for Pulmonary Doctors in Suffolk County Long Island New York in April for Sarcoidosis Awareness Month. If things work out FSR will be there also as well as The Suffolk County Health Committee. I also finally got NY State Senator Kenneth LaValle to write an order that will get passed in February making April Sarcoidosis Awareness Month in New York State. I just got a call today from Suffolk County Legislator Kara Hahn’s office. I have a meeting on January 14, 2016 with the Suffolk County Health Department Commissioner and her to discuss our plans and how we can accomplish our plans for a Seminar with the Pulmonary Doctors of Suffolk County and also to work on a date so we can get the ball rolling. I want to thank you, Kara Hahn, for all your help. I also want to thank Valerie M. Cartright for supporting me throughout all of my work on Sarcoidosis Awareness.

I personally am going back to Mt. Sinai Sarcoidosis Clinic, because I have been diagnosed with Sarcoidosis in over 80% of my body. It has gotten so bad that my pain level is always at a 9-10. I am seeing Dr. Morgenthau, an amazing doctor. I am very hopeful that I will find some sort of balance in my care. Now to get balance in my life with my Health and my Advocating.

Just some more updates to my story as of March 31,2016. Plenty has happened since I last wrote in my note. Let’s see. I went to Mt Sinai and found out my many diseases are blocking my treatment. If things don’t get better I may have to get off of all my medicines and start from scratch. Needless to say that will be crazy tough. So they have tried new treatment for my left eye so I don’t lose the vision called Prokera. It went amazing! So I am very happy about that!!

On the Advocating front… It has been a whirlwind! From Feb 28-March 4th I was in Washington DC for Rare Disease Week and also advocating for Sarcoidosis Awareness! Met some amazing people while at Rare Disease Week, Elisa DeBellis Seeger, Mari-Elaina Garcia, Stephanie D Fischer Jesse Marimat, Lisa Sukel Schill, and Shira Rose to name a few. They really made this visit amazing. Also all the fellow Sarcoidosis advocates, Cathy Wick, Cathleen Terrano, Alesia ONeil, Zakiya Moza Aziza Asiya, Jenny Hinton, Rebecca Remington, and Aretta Hairston-Smith. I also was named FSR patient ambassador, which is such an honor. Also I have been working with New York State to get a resolution making April Sarcoidosis Awareness Month. It came through last week. Also received a letter from President Barack Obama for my hard work and dedication, what an honor. Last but not least I have been working on getting a Federal resolution and thank to Senator Schumer’ aide Morgan Brand, and US Representative Lee Zeldin’s aide Matthew Scott, are making resolutions to make April Sarcoidosis Awareness Month. I am also in the process to have a Rare Disease Day at Stony Brook University Hospital, It will be an event to help raise awareness for the 7000 rare diseases. As you can see I have been quite busy. I just hope to keep my health up and keep that balance.

November 17, 2016- Update- I was nominated by Global Genes for advocate of the year, what an honor! I had a great event “A Day for Rare Diseases” on October 15,2016. We had speakers from all different aspects of Rare Diseases. We had government officials, from who spoke as well as came to represent and support the Rare Disease community. We also had great speakers from different aspects of the rare disease community. I have to thank all of my sponsors, Global Genes, EveryLife Foundation, WIRC, Foundation for Sarcoidosis Research, Angioma Alliance, Aiden Jack Seeger Foundation, RAS and IPPF. The event was such a success thanks to Diana Small-Rivera, Nadia Bodkin, Kendall Davis, and all of the other volunteers.

On a more personal note- I have been having a tough past couple of months physically. I have to have surgery number 7 in December. I just hope they find what they are looking for this time. This disease has been kicking my butt, but with all that I am still fighting and advocating. We need 21st Century Cures Act passed in this next session of the Senate. #CuresNow

My goal for next year is to get Sarcoidosis Awareness Month of April through the House of Representatives and The Senate. We had it put up last year now we need to get it passed this year!!!

May22, 2017-

It has been a long time since I wrote more on my story…

On the Sarcoidosis and Rare Disease front February and March, FSR and Sarcoidosis of Long Island hosted another Congressional Briefing. It was a huge success. I as well as three others spoke at the event. April was a very busy month, it is Sarcoidosis Awareness Month. We had a huge support group meeting with Council woman Valerie Cartright and Suffolk County Legislator Sarah Anker were able to attend as well as counselor Debby Knapp to show support for Sarcoidosis. Sarcoidosis of Long Island also was able to host a fundraiser at Buffalo Wild Wings. It was a great success! We also had our 3rd Annual Sarcoidosis Awareness Walk. It was held in conjunction with walks all over the world on the same day for Sarcoidosis.

I have been through a lot since November. I had surgery in December for scar tissue on the mesh for the hernia. I have been dealing with a lot on a medical front. I was diagnosed with fluid and more granulomas in my heart; I also have a retinal hemorrhage.

The big diagnosis has come recently. I have been diagnosed with Parkinson’s. That was a real shock. I was diagnosed years ago with essential tremors, which I found out was misdiagnosed. I am just starting on a new medicine for that, Carbidopa-Levodopa. It is a build up medicine; I am on week 4 now. The shakes have been pretty severe at times. I won’t lie this is a tough diagnosis. It has nothing to do with the Sarcoidosis. I am still trying to get through this new obstacle, but I will fight this just like everything else I have done.

When do all of these new diseases stop!

One last thing for this post! I am working on a huge project…

I am working with the Town of Brookhaven and Suffolk County first to help those rare disease patients and caregivers with mental health. Sarcoidosis has lost too many people lately and especially due to suicide. But that is just one rare disease, so many rare disease patients and caregivers suffer mentally as well as physically. My new project is to help those with rare diseases and their caregivers receive affordable or pro-Bono counseling. This is a huge project I know but I will get this done! I can’t see any more people suffer mentally or even worse commit suicide because they can’t afford mental healthcare.

I know I take on many different projects but this one is more than just a project to me, it is personal!!! I have dealt with mental health issues due to my physical health. I personally see a counselor and it has meant so much to me. I really wouldn’t be here if I didn’t see one!

July 5, 2017:

I am writing today because on July 3, 2017 was my 5oth birthday! That may not mean a lot to many but to me it is a huge milestone. I haven’t really spoken about this too often, but I am lucky to have made it to this birthday. People may say I am exaggerating, but I really am not! When I was a child I had a form of childhood leukemia. I was so sick I barely remember my childhood. When I was 5 I was very sick and the doctors couldn’t figure out what was going on. I had no energy and I also was constantly running fevers. This may sound crazy but this is true, I couldn’t and didn’t go to school for half of Kindergarten all the way to the last part of 4th grade. I don’t remember much of that time except that I read a lot. When I mean a Lot I mean A LOT! I read the whole Britannica World Book Encyclopedia 1972 edition from A-Z during that time. There were many times during that time I have heard from my Mom’s family and friends that they were fighting with doctors and hospitals to find out what was wrong with me as well as how to keep me alive. Many people ask me how I graduated from school, especially missing 4 plus years of school. My answer is my loving family and friends. I bothered them so many times to explain what I was reading. When I moved to Centereach NY, the last half of what was supposed to be my 4th grade; I was cleared to go to school. When my Mom and I tried to register for 4th grade the school was like but he never went to 1st – 3rd grade. How can we put him in 4th grade? My mom insisted that they test me and see where I belong. So they accepted that and I tested for a day. When I was done they put me in a class. I remember looking around and saying “Wow I am really small compared to everyone else.” At first I just dismissed it because I was smaller than everyone else to begin with. Then when I looked around I noticed some of the other kids from my block in the class. Then it all occurred to me; I am in a 5th grade class! Not only that but I was in advanced classes! For most people that sounds amazing but for me I just wanted to be in my own grade of 4th. I asked and was granted to go back to 4th grade. So you see I write this so you understand why I am who I am! As I go on I will start to let you all in on many things I never talk about too many people. Why am I doing it now? It is because as I turned 5o I realizing how much my past has made me who I am and why I do what I do. I am a fighter! Always have been and always will be! I am here because I am a fighter! I was told many times I wasn’t going to make it, but yet here I am! I have to say “Thank you Mom!” One of the biggest things you showed me in life was to always be a fighter! She was sick for most of her life and fought so hard for us! I love you MOM!

July 12, 2017-

I am writing this so soon because I really want you to know that my life is getting harder by the day. I have been told by multiple doctors that I need to take a step back from doing so much to fight for those with rare diseases who can’t fight for themselves.

Since I have been diagnosed with Parkinson’s in April I have been really fighting for a balance in my life. My doctors don’t want me traveling without someone else being with me. For someone like me that is devastating! I have been very self sufficient all of my life. To be told that I need to rely on someone else is so terrifying. I want to be able to still advocate for rare diseases, so I have to figure out how. I won’t stop advocating! I it is something I have to do!

Just to let you know; just because my health is getting worse faster than even I expected, I will fight hard for me and all of you that need me to fight for you!

On a great note I have been nominated for two awards by WEGO Health partners, Patient Leader Hero as well as Best Kept Secret. I also have been nominated by Global Genes as RARE Champion in Advocacy, as well as RDLA Rare Voice nominee. I am so honored to be nominated by the amazing national organizations.

Just so you know I am not looking for sympathy in any way at all! I write this so people can understand my fight as well as know we can still move forward even when things don’t go your way!!

August 18, 2017– Just found out last week I had a mini stroke. Thank goodness it was a small one! It affected the 4th optical nerve in my left eye. I have double vision as well as my eye drops and don’t react fast enough. I am also going to a pain management doctor also. I really didn’t want to go to them but they can’t stop the pain anymore and I really would like to find a different way to take care of my pain other than opiods. I take them hardly at all. I keep moving forward. Nothing is going to stop me!!

I want to thank all of you that support me in all of my endeavors and with my health.

I want to say I Love You Diana Small-Rivera for being my support and being by my side through all of our tough times! You are my rock and my love! I also want to thank my daughter, Savannah, for her support and I Love You both so much!!


September 22, 2017-

Here I am sitting here thinking on where my path in life has taken me and how grateful I am to have such amazing people in my life. I came back from the Global Genes Summit realizing how many friends and supporters I do have. I never thought of myself as anybody different than anyone else because of my rare disease. I still believe that but I did realize I may not be different but I am strong! So many of my rare disease friends, advocates have really made me realize how strong I am and can be. I thank all of you that have made me realize that I have made a difference. I want to thank Global Genes for pushing me to be a better person and advocate and showing me my voice makes a difference.

Kendall Davis you are amazing! You have helped me so much to be a better advocate but more importantly a better person. You have been there so much lately to listen and be a friend. I have had some rough times lately but you have always been there for me. You are one of my best friends and are such an amazing person! You picked me up and even given me a kick in the butt when I needed it. I love you, Diana loves you and Savannah loves you for all that you have done for us. You may think you haven’t done much but you will never know what you mean to our family. We couldn’t say how much we care for you and for Nathan too.

Tricia Mullins, what can I say about you? You are such a great help to me and all of my endeavors, but more importantly you are such a great friend! You have been there when I needed you the most. You are always there when I need an ear or for direction for my project. If it wasn’t for your idea my project wouldn’t be where it is now. Your heart and love can never be measured. My whole family loves you! I am so glad we are working together but more importantly I am honored to call you my friend!! Saying I Love You is an understatement!

Nadia Bodkin I hope you know how much you mean to me and my family. We love you and you are our hero. When we started talking I knew I could learn so much from you to be a better advocate and even more to be a better person. My daughter to this day still talks about you. You have made such an impact on me and my family. I could never repay you for all that you have done! Much Love to you!

February 3, 2018-
Welcome to the New Year! I am back with more things to say and to update you on me!
As many of you know I have been dealt with many obstacles in my journey. With each one I have been able to face with a smile on my face. I won’t lie each and every time it gets rougher!
Well here it goes! My Update:
So since I last wrote in here, many things have changed some Great, some Good, and some Tough.
Let me start by saying I really don’t ask for pity or anything. My main goal of this is twofold.
One I want people to understand what people with rare diseases go through. I may have some unusual conditions and circumstances but we all have struggles.
Second is to show you even though we do have our battles one person can make a difference.
So let’s get back to the subject! I am dealing with multiple diseases as you all know.
Since I last wrote I have been working on some major projects but none as important as my Mental Health Project! I am under a gag order on this project but I do want to let you know I have been working on helping the Rare Disease Community, which includes the patients, caregivers and their families, on helping them receive affordable health care. I have an amazing Board of Directors that all have the same goal as I do. We all are working hard to help the Rare Disease Community with one of the most under looked part of a rare disease patient and family, Mental Health.
More to come on that real soon!!!
So let’s talk about my health. As you know me by now and for those who don’t know , I am very transparent. I know some say too much! But this is me and this has put me where I am today.
I have been dealing with a lot of new health care concerns. As my last post said I had a mini stroke. Well I had my second mini stroke in six months. Scary yes! My doctors have really been trying to figure out why, but because like every doctor says I am a difficult patient to diagnose. Having three major diseases and some others makes it really tough to treat. One wrong medicine can kill me. So we have to be proactive but also be very careful. It is a tightrope act!
Also my Parkinson’s has been acting up and now my Sarcoidosis is in full flare up. So it really has been tough both physically and even more mentally.
I have been telling people that I am assessing my workload. I have talked to many people about what I am going to do to lessen my workload and travel. I really do appreciate all of my fellow rare disease advocates and organizations for their support and understanding.
Yet again my doctor is telling me to stop. But he knows that is not me! If I stop I might as well give up! I am not a quitter. We have compromised by cutting down my workload.
As I told many my main focus is this new project, but it doesn’t mean I am stepping back from the other projects I am involved in. Just an understanding that I won’t be able to be at many different functions, and if I am not feeling well I will let them all know.
So with this I am also relying on my friends and fellow advocates to help me out. I really do have a great bunch of friends and family. I love you all!!
Unfortunately I won’t be at Rare Disease Week for the first time in 4 weeks. I am quite sad that I won’t be there. I do love advocating! But I know that I need to take care of my health first.