My life in a nutshell.

Today I woke up early. I wake up early these days not because I have to but because my body says so. Today is because of the pain.

But you know what? I am very thankful that I get to wake up! You see, somebody with a rare disease like myself can’t and don’t take waking up for granted.

I am so blessed to be here! I realize I wake up in pain everyday and can’t do so many things that others do take for granted, but I am here and I am still a force to be reckoned with! I have a voice! I will make sure people will hear me. Some may not like what I have to say but I speak so others can understand what it is like for a rare disease patient like me to live each day. I also speak for many others who can’t speak up for themselves.

I took some time to do a little recouping and soul searching recently. I realized a some things lately.

One thing I realized is that no matter what I am destined to be me. You may say well of course you are. Well sometimes we forget what it is to be ourselves. I know who I am. I am someone who cares, sometimes too much, about others and myself. I need to be me. I need to do what I do the way I do it. I can’t be someone else who people want me to be.

Just know that the person I am may not be to everyone’s taste, but I am really here for the greater good for the Sarcoidosis and Rare Disease Community. I am in it for the whole not for me.

I have said in past blog posts that I most likely won’t be here for a cure for me, but I am here for a cure and to make a difference for so many others that have a rare disease.

I really am not a person who thinks I am better than anyone else, as a matter of fact I truly believe the opposite. Ask many that know me, I really don’t know why people even know who I am.

All I am here to do is to make sure WE as a Rare Disease Community have a voice. I am one of so many people who try to make sure we aren’t forgotten.

I want one day when the over 7000 rare diseases have a cure not only 5%.

I hope to see it and get to say I had a say in that! I want to be able to say I made a difference.

So these are my thoughts when I wake up at 3am in the morning.

I hope I make a difference in your life! Many of you have made a HUGE difference in mine!

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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

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 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!!

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