My thoughts as a follow up to What about Us?

Hey everyone I know I wrote a blog yesterday that may have caused waves among the Rare Disease Community…

Do I regret it?? ABSOLUTELY NOT!!

Will I stop talking about it?? If you think YES, you don’t know me by now!

I have been thinking more about this today. I am not against anyone at all! I am not against that organizations have said that 50% of Rare Disease Patients are children.

I just want to not be forgotten. I also want to make sure that in our community there isn’t a feeling of separation.

I know we don’t discuss this often. I FEEL WE NEED TO AS A COMMUNITY!

Why shouldn’t we discuss this as a Rare Disease Community?

Why should I or anyone else be afraid to discuss this or feel sorry if we bring up an adult that has a rare disease?

I really have been thinking about this so much lately. I guess partly because as an adult with Sarcoidosis, Sjogren’s, and Parkinson’s I shouldn’t be ashamed. I am not saying anyone has made me feel this way personally, but I always have felt that this has been the elephant in the room.

I am not here to pull apart the Rare Disease community. I am here to bring the community together. If 50% of the rare disease community are children the other 50% are adults. We are all part of the community! I never had a thought on my mind that I was advocating for a child or an adult. I was advocating for the 30 million rare disease patients.

What actually had me write the blog yesterday was not just seeing the Today Show spot yesterday morning but also just laying here as usual in so much pain and thinking how much as an adult patient people don’t realize what we go through also. Also being told by some TV and newspapers and I quote “That there isn’t an interest in knowing about an adult patient.” Are you kidding me??? Also when interviewed I have been asked on multiple occasions “How many Children have your disease?”

So then I think.. What are we doing as a Rare Disease Community to help raise Awareness for adults with Rare Diseases? I realized NOT ENOUGH!

It is not fair for anyone to have a rare disease! I know life isn’t “FAIR.” But to be pushed away from everyone and then to feel like this is a taboo subject is ridiculous.

We as a community shouldn’t have any taboo subjects!

I really started thinking of all of the conferences, all of the government officials I have talked to, all of the rare disease community events, and also all of the television spots about rare diseases we mainly hear the numbers of children. Not that it is wrong, but what about us as an adult community.

I have been thinking about this for months. I decided to speak up now because with my health getting tougher to deal with and with so much to look forward to like moving forward as an organization President and also on a personal level. Knowing that I most likely won’t see a cure for any of my diseases is really so tough to get through my mind.

I am not here to make you feel sorry about me at all.

I am just talking about how I feel as an adult rare disease patient.

I don’t know how it is to be a rare disease parent and hopefully never will.

I do know how hard it is as a patient and do know hard it is on my family and worrying if I may pass it down to my daughter since we aren’t sure if it is genetic or not yet! I also understand on how hard it is to raise a family on a very limited budget due to my disease. I also know what it is like to see the ones you love worry everyday about me!

I also know what it is like to be looked at like there is nothing wrong with you! To be told you look great! To be drug tested when I go to the hospital! To be told there is nothing wrong from emergency room doctors!

The worse parts of these diseases are:

To be looked at from people you know and think that I am faking it!

To be worried what people think of you!

To be told by specialists that there is nothing else we can do for you!

To be in pain EVERY SINGLE DAY!!

I am an adult patient advocate!

I am an adult rare disease patient first and foremost!

Rare Diseases… What about Us?

So here I am laying down thinking to myself why? So many whys to ask about…

Why do I have a rare disease that nobody can treat?

Why am I in so much pain everyday?

Why is the “Rare” disease community still not being respected?

Why don’t 30 million Americans count??

And today I am going to talk about a very tough topic…

WHY ARE THE 50% OF RARE DISEASE PATIENTS THAT ARE ADULTS ARE  HARDLY EVER TALKED ABOUT? 

Let me set this disclaimer out there first.. This is only my opinion! Nobody else or any organization has anything to do about this post. Also I am not diminishing the 50% of the children that have rare diseases. I also understand it hits the heartstrings of people when you talk about children.

But let me tell you from an adult perspective of having a rare disease called Sarcoidosis.

I was laying down today watching the Today Show and saw a great clip by Richard Engel about how the Tax Reform Cuts will affect the Rare Disease Community, especially the children. I wanted to thank Peter Saltonstall, President/CEO from NORD and Emil Kakkis, Chief Executive Officer, Ultragenyx Pharmaceutical Inc. for expressing their opinions and supporting the rare disease community.

Okay so now I am going to talk to you from my adult patient perspective…

I cried watching that clip on the Today Show! There were many thoughts going through my mind! First I watched and felt the pain of those children and also the parents.

Then came the other reason I was crying… I looked at that piece and so many others like that and they all have one thing in common… NO ADULTS DEALING WITH RARE DISEASES ARE BEING SHOWN. WHY???

I was crying because I lay there in pain that I wouldn’t wish on my worse enemy! I lay there because if I move too much I don’t know if I am going to pass out. I lay there because my pain level is at an 8-9 level from 1-10. I also lay there knowing that being a realist that I will never see a cure in my lifetime, but yet I fight for the rare disease community to possibly make it better for someone else.

Adults with a rare disease are a different breed. Either we were having and living a normal life then all of a sudden our lives changed in an instant… We didn’t ask for this.. We get looked at like we are lazy, looking for attention or just making things up. We deal with trying to either work if we can or have to because we can’t get disability or even if we do we can’t live on it.

We also have the pressures of trying to have a support system, finding someone who will support us mentally and sometimes even physically and financially.

Someone like me that has been the hardest thing for me! I want to work! I can’t work! I went from a runner to someone who has had 9 surgeries in 7 years. I want to be able to support my family but I can’t. I have an amazing wife who I see has to deal with the everyday pressures of being the bread winner and then also being a Mom and worse yet  wondering everyday what is going to happen to me! People don’t realize being an adult with a rare disease is so much pressure on your significant other as well as your child. I can’t do things a normal Dad and husband can do. I try my best, but the reality is that I wouldn’t be here if it wasn’t for my wife and my daughter and I will never be able to do what other Fathers do!

I also live with the fact, being a realist, that I will never see a cure in my lifetime…. let me talk to you all about that!!

Does anyone who is not a patient understand that??? Really, I know my life is not going to get better and most likely will get worse. I know that sounds terrible but it is a FACT! Imagine knowing that the pain I feel today will never go away. Imagine being old enough to realize this but too young to die! Like I said I never know how I am going to be everyday.

Imagine waking up to a phone call from your cardiologist saying “I called an ambulance for you!” “Your heart stopped twice while sleeping!” Also imagine waking up on the floor not knowing how you got there. That is my life, EVERYDAY!

I didn’t write this just to complain about me….

So here I am laying down wondering why don’t people talk about adults with Rare Diseases?? I get upset hearing well you lived your life!! Excuse me??? When is 50 a whole life??? I am grateful that I have made it to 50, but to say that I lived a full life is one of the most insensitive things I have ever heard!!

Like I said before I understand that people will look at children and feel real bad. And as I said before I don’t mean anything bad about the 50% of rare disease patients are children.

Please do remember that the other 50% are young adults and adults. We deserve respect just as much as anyone else! We suffer too! Our Family suffers too!  We have to make dramatic life changes just to stay alive! We live day to day too!!

So when I see something about Rare Disease patients why can’t we get a point of view from both adults and children??? Is that really too much to ask???

As I write this I am crying, yes I am a man who cries and not afraid to say it, because knowing that I might upset those in the Rare Disease community, either parents of children or others who just like to get on me for things I say or do.

I want people to realize that their is another side to this community…. Please don’t forget about us ADULTS!!!

 

 

 

 

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

I AM TRYING!

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!

Just a Day in the life of A Rare Disease patient.

A couple of phrases you never want to hear:

We can’t figure out what is wrong with you.

There is nothing we can do for you.

This is the worse thing to hear:

Just Deal With It!

Well here it is President’s Day. Let us celebrate! Well for me it is another day of extreme pain with no answers in sight.

What did I do to celebrate the holiday? I have been in bed all day barely wanting to eat and drinking Gatorade so I don’t dehydrate anymore than I am.

Everyone says to me go to the hospital… go to the doctor… I have tried that. Nobody has an answer.

I was in the hospital 2 weeks ago for 4 days. What did they say? “We don’t know why you are dizzy, we don’t know why you are having TIAs.

So in other words you just have to deal with it.

What a way to live!

This is something many Rare Disease patients deal with.

I am sick, tired, and wondering what is next for me!

Yes it gets depressing! Everyday it is a new challenge.

But when does your body want to say enough is enough??

I am not sure when that is but I know mentally this is so draining which then affects your body even more.

I am writing this to let you know that I am trying! That is all I can do! I won’t say I am fighting! I am trying!

I don’t ask for pity! Never had never will! I am just writing this to show you that the lows are lows. The highs are highs.

I always put up a brave face, say I am doing fine! But guess what???

I am not fine!

My Sarcoidosis Story

Thank you to Nathan Davis for your amazing story about me!

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 (www.sarcoidosisofli.org).

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 4th Annual Sarcoidosis of Long Island Awareness Walk is on April 14, 2018 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 two 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.

Frank turned 50 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!!

I HEAR YOU! I AM ONE OF YOU! i HOPE BETWEEN THIS AND MY PROJECT I WILL BE ABLE TO HELP YOU!!

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 50. 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 fjr311@gmail.com. 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!!

LAST BUT NOT LEAST THERE WAS THIS GREAT BASKETBALL COACH , JIMMY VALVANO, ONCE SAID” DON’T EVER GIVE UP! DON’T EVER GIVE UP!”I LOVE YOU ALL!

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.