Things that need to be said.

Today has been a real tough day for me. As you all know I have been going through a lot lately. As per usual I only tell half of it. Why?

There are many reasons for this. I don’t want to be a complainer. I also need to keep things to myself so I don’t worry others. I know that isn’t the best way to do things but it is me. So I do what I feel is necessary. For me and for the benefit of others. I know that is selfish of me, but sorry not sorry, deal with it.

Most of my life has been a series of ups and downs. I am sure many of you know what that feels like.

I have dealt with childhood leukemia. I have dealt with foster homes. I have dealt with my Mom being sick most if not all of my life until she passed away in 2001. I dealt with my father not being in my life most of my life.

I say this not for pity at all. I say it for understanding. I always thought in the ways of survival. Not in the ways of right and wrong for a long time. Don’t get me wrong I didn’t look to do bad things. What I am saying is that my decision making was skewed by how to survive. Let me tell you it sure is not a great way to live. Not at all!

So as I grew up, it took me awhile to figure that I didn’t have to think like that anymore. It was freeing. It was also scary for me.

So life made me who I am… Isn’t that what life is suppose to do?

So I get the call today.. Something I have been told by others but hearing it from this doctor makes it so real…. Don’t keep your hopes up to get your defibrillator/pacemaker.. No surgeon or doctor will do any kind of surgery on you now or maybe even ever… My white blood cell keeps on going up and up. So far up that nobody would dare open me up for anything. What makes it worse is that they have no idea why it is climbing.

So if I go in the hospital with my White Blood Cells so high I will catch something and possibly die. If I stay home I could catch something and die. So what do I do? I have made my decision to live. I can’t live on the what ifs. I can’t live my life in a bubble either. I haven’t been feeling well lately. But every test has come back normal. What is it? We don’t know.

I do know one thing…. I am going to fight and be me. I am not trying to die but I am trying to live while I can. I won’t lie the news did depress me. It is scary to keep on hearing bad news after bad news.

So I wrote this post because like the title says these are things I needed to say. I may show an outward strength, but I am just human. I worry, I get depressed, I cry, and I ask why me? I also ask how much longer can I take this?

I do know that I will still be me, smiling, fighting and saying I will be okay. But know deep down I am scared just like anyone else would be. I am wondering what is the right thing to do?

So we you see me smile just know that I am not “fine.” I am just being me and not showing everyone the physical and most importantly mental pain and anguish. I am also not showing the uncertainty of am I doing the right thing and for that matter what is the right thing!!

Just know I am not ever giving up. I am just doing what I know to do. Is it right to put on that strong face? For me that is who I am. I will be a bit more making sure I am being careful, but I need to be me.

I don’t know if this post makes any sense at all. I am a bit scrambled lately. But I always have been one to say it how it is. I also have always written what my thoughts are right now! I hope you can understand and truly get to know me.

Why I do this!

So today I have been just thinking “Why I became a patient advocate?”

I know many of us advocate have different reasons why we do what we do. So I just wanted to reach inside and figure out why I do this . You see being a patient advocate is a very tough job. Many times it is a job that many people will not recognize you for what you have done. Then there are so many others involved that know what you have done. Then there are other times where if you wonder if you are doing enough. Especially after seeing people you know or grown to love are passing away.

So after being in deep thought these past couple of days, mostly because I keep hearing bad news from doctors for me. No I am not self pitying myself at all. It is just reality! My health has been on thin ice for awhile. Unfortunately all it takes is one thing and I may be down for the count, forever. That is true with many with rare diseases.

In my community it is always so hard to see people passing away and so frequently in the last couple of years, over 80 in the past 2 years that I know. You see they, the doctors and researchers, say you don’t die from Sarcoidosis! Well I call BS. To be specific, we might not die from Sarcoidosis, but most of us will die from a Sarcoidosis related side effects. For example, Heart attack, pneumonia,lung transplant, neurological issues and any other organ issues that our Sarcoidosis has affected.

In my case most likely be because I am too sick to get a surgery or two that I definitely need. We have been putting it off longer and longer because I keep getting worse not better. So what is the answer? I don’t think anyone knows that. You see I was suppose to die months ago. At least that is what I was told. A year ago April I was told I have a couple of months to live. Did I believe it? Yes! Did I accept it NO! So I know what ever happens from that time is suppose to be icing on the cake! But honestly who wants to die? I truly thought I am ready to die. I am okay with it! Well I am lying! I am not ready! I never will be ready!

Why you may ask?

Many of my reasons aren’t about me. It is because of my family, it is because of the Sarcoidosis community I fight for. I love fighting for my community. It is actually one of the big reasons I do it. I want to find a cure! Whether it helps me or not that is not the objective. My objective is to leave this world in a better place when it comes to Sarcoidosis and any other rare disease. Odds are we won’t find a cure in my life time, but if we are moving forward and are in a better place with Sarcoidosis then I can die content. My mission when I started my organization was to be able to say I helped at least one person! That was and is still my goal. Whether it is with finding that person with information about the disease, finding someone a doctor, or just being able to ease their mind to let them know they are not alone! So you see I am not ready to die yet because I don’t think I am done with my mission.

That leads me to a couple of things of what have made me happiest about being a patient advocate.

It is not the award nominations or winning an award. It is not the recognition I receive, if you know me at all knows I would rather be behind the scenes setting everything up. It is definitely not the speeches I do, though I have learned that telling my story does have impact on other patients and also others in the field that I communicate with, government or pharmaceutical companies.

What makes me so happy about what I do is things like:

1- When I get a phone call from a Sarcoidosis patient when they see on television that Senator Schumer spoke about Sarcoidosis when introducing Hillary Clinton at the Apollo. Just to hear their voice that they were acknowledged. Also to know that I was able to reach a Senator enough to speak about an invisible illness. Not just an invisible illness that you don’t see our pain but an invisible illness that it was hardly ever spoken about.

2- Having a patient call me to say that they were ready to give up about their Sarcoidosis, because nobody understood, and they saw my website, or blog and saw me fighting and they read what I went through and they said to me that if I can fight so can they!

3- Setting up a walk for the first time 5 years ago and continuing to see all of these Sarcoidosis patients coming from all over the USA to connect with other Sarcoidosis patients. To see them smiling and talking to each other truly brought tears to my eyes. To see them come up to me smiling and crying and thanking me for doing this and showing them they are not alone. One of the best feelings in the world is to see how many of them became patient advocates and advocates for someone they love is actually the best feeling in the world to me!! Knowing that even when I do pass away we have so many great advocates for Sarcoidosis. That they will carry the torch for Sarcoidosis for many years to come!

4- I love when I am able to do something out of the ordinary for a Sarcoidosis patient. Something that they never have expected. I don’t publicize that I do it. I just am happy to see or hear how much it has helped either them or their family. Some recent examples is being able to have Sarcoidosis patients and caregivers on a billboard a couple of times in Times Square! The first billboard was on Rare Disease Day that I set up. After that I was able to work with the billboard company two more times to get Sarcoidosis patients and Caregivers pictures and something they wanted to say about Sarcoidosis. I did it not to promote me or my organization, but to give these patients the power to say “Look at me! I am here!” It also was done to let others know that they were not alone and they had someone to talk to.

The biggest thing that truly made me so happy was just last month. I was able to work with the Brooklyn Cyclones to have a day for one of our younger Sarcoidosis Warriors as a Cyclone for the day. I know our Hanna was embarrassed about it, but she will have something to talk about for the rest of her days. Even if it is just that she got to sit next to the HOT GUY on the team and get a picture. She was also able to throw out the first pitch for the game. She did an amazing job! It also was for her family. I wanted them to know that we appreciate everything her family does for Hanna and all of us in the Sarcoidosis Community. I love seeing all of their smiles. I love that Hanna came up to me and said “Thank you and I Love You!” That made the whole day worth it!! All the pain and travel was worth it at that direct time!

So you see why I do what I do??? I wish everyone can get that feeling! Just touch one life and you made all the difference in the world!

So I guess part of me doing this is selfish in my own way! But you know what? I wouldn’t trade this for anything in the world!!

That is why I am saying I am not ready to pass away anytime soon! I want and need to do this not just for everyone else, but also for me.
I truly want everyone to know that no matter what happens to me that Sarcoidosis will be cured. It is moving in the right direction!

When I started this 7 years ago, I never would of believed we would be where we are. Thank you Foundation for Sarcoidosis Research for truly caring and moving forward at a pace I never knew we would be at. Thank you to all of you Sarcoidosis patients, caregivers and advocates! What you have done is amazing, ALL OF YOU! You might not think you have made a difference but everyone that I have made a difference not only in my life but also in so many others lives. How you might ask? Everyone that I have talked to or have chatted with whether on phone or on Facebook or any other social media, just know that you have made me who I am as a person and advocate. Each story has helped me make changes and set a course for every decision I have done. YOU ALL ARE VERY SPECIAL TO ME!

When You Doubt Yourself

Today many emotions have been going through my mind. Well actually it has been happening for the last couple of days.

On Friday someone who I called my sister passed away. LeeAnn Bruce was another Sarcoidosis Warrior and more than a Sarcoidosis Sister to me. She was a sister to me. We talked so much during our fight with Sarcoidosis, you teaching me so much and I walked you through some Sarcoidosis information. We talked about life. We talked about death. We talked only a couple of weeks ago. We had a short conversation, but a very impactful. We talked about life. We talked about what we were going through and what our mind set was. We knew that whatever we were going through we would fight and smile as much as we could. We both knew we were and I am still facing is not only up to me but to God. Yes we both knew and know when it was or is or time it is our time. Whether we like it or not. All we can do is try to be at peace with ourselves.

You see LeeAnn told me she was at peace with herself. I am so grateful for having that conversation with her. I know that is being a bit selfish, but you see this is what goes on with us that are chronically ill. We wake up happy to see the next day. We never know when we go to sleep if this will be our last day. I know people are going to say nobody knows what is going to happen tomorrow, yes that is true, but to have a chronic illness or worse yet being terminally ill is just another reminder that your life is different than most people.

Now LeeAnn passing hit me so hard. I am not one to show my emotions, When I say that I barely show it to my wife, daughter or even my counselor. I know they know I am sad and having a hard time but I hardly ever show how much I am hurting. You see LeeAnn’s passing hit me as hard as any other person that I know with Sarcoidosis has passed. There have been way too many people with Sarcoidosis that have passed. I know that each one is as bad as the other, but you have to understand there have been three in part that have hit me so hard, not because of anything but because of how close I was to them.

The first one to devastate me was Andrea Timmons. She was the very first person to actually reach out to me when I told everyone on Facebook I have Sarcoidosis. I went into her Facebook group TOSS. It was the first group I went in about Sarcoidosis. She greeted me with her usual amazing upbeat greeting! She knew I was brand new and scared. She came into my messenger and talked me through so many feelings. She always checked on me. We talked whenever we could not just on messenger but on the phone. She went through so much in her life, but she always made time for me, especially when I was going through surgery after surgery. She also talked to Diana, my wife to help her out. She was truly amazing! I always wished and wish I can be half of the person she was. When she passed it truly broke my heart. It also broke my spirit for awhile. But I remember that Andrea is the one who talked me into being an advocate. In her exact words ” Do you realize what you are capable of doing? You have the power to make a difference in people’s lives!” That always rings in ears and heart! Someone so special had that much faith in me to make a difference! Someone who made a difference in so many people’s lives actually had faith in me and inspired me to do what I have done and still do!

Then I got a call from Kelli from FSR ( Foundation for Sarcoidosis Research) ” Frank I wanted you to hear this from me before anyone else. Paul Dickerson passed away!” I thought I was dreaming! More like a Nightmare! His wife wanted me and some others to know before everyone was told. Wow! She found out her husband passed away and she took the time to tell Kelli to call me and some others before anyone else knew. You see Paul is another amazing Sarcoidosis Ambassador, but he was so much more than that to me! He was my friend, not just any friend but one I considered to be one of my best friends. When I met him at Ambassador training I knew he was so special. His insight and demeanor just put me at peace. He always told me ” You are my hero!” But he was my hero! I told him that. He always just shook it off as I haven’t been through half of what you been through. I said to him ” It isn’t how much we have been through, but our fight to get through what we are faced with!” We used that as our mantra of life! We talked in emails, messenger, and the best times were on the phone. We talked about how we could help each other out. We talked about our struggles but most of all we talked about family and life. One thing I will always remember from our talks whether on the phone or in person, there is one thing we always ended our conversation with! ” I LOVE YOU BROTHER!” He always told me that! Of course I would say it back, why? Because I truly loved and will always love Paul! We weren’t “blood brothers” but we were BROTHERS! Blood isn’t the only way to be brothers. So I am going to stop this paragraph by saying “PAUL I LOVE YOU BROTHER!!”

You see when you advocate for something like a rare disease or chronic illness, there are times when you truly look at your self and say ” Am I really doing the right thing?” You ask yourself “Am I actually making a difference?” “Why do I do this?” “Should I just stop doing this?” It is normal to have these feelings, especially when you see people dying so often. I know I am doing this for a reason. I know I have made people think. But is that enough? I guess that is for someone else to decide. I know I doubt myself many times, but like I have told these three people, no promised these three people “I WON’T QUIT FIGHTING FOR THOSE WHO CAN’T FIGHT FOR THEMSELVES!”

I don’t want to sound conceited or anything of that sort. But I do know I found my calling! I got these diseases for a reason. Whether I like it or not, I got these diseases to help others, but most importantly to help me. I got these diseases to guide me to do something and be somebody I have always had inside of me. I am a fighter. Always have been always will be. I made many mistakes in my life. I am not proud of them, but it truly brought me to this place. It made me fight not just for myself, but for so many others. Many of them who aren’t able to fight for themselves. If you would of asked me when I was a kid this is where my life would of taken me, I would of laughed, well maybe not laughed but definitely would not of believed it. I never considered myself a fighter. For a long time I considered myself a survivor. There is a big difference. A survivor is someone who does things so he lives. A fighter is someone who does things not for just myself but for others so they can live as well as I can. I have considered the difference for a long time. What makes me different now compared to me before? Well part of it is maturity, another part is learning who I am and what I want to do. I know that the odds of them finding a cure for me is very small. But knowing I can get us moving in the right direction and also if I can help someone find a doctor or recommend some medication help to ease their pain or might even put them in remission is what keeps me going. I have come to terms about me and my health. They are trying to pull a rabbit out of a hat. Doctors have basically said that we are trying to make you feel comfortable. That is a weird feeling, but I know I am going to be okay. Honestly no matter what happens to me I will be okay. Am I ready for death? Is anyone truly ready? I can say this.. I am at peace! I am scared but at peace!

So here I am day three writing this blog. Never knew this was going to be so hard to write. Like I said in the beginning so many emotions going through my head and my body. Lots of crying, lots of soul searching and lots of praying that whatever happens that these people who keep on dying due to this terrible disease called Sarcoidosis aren’t dying in vain.

I just got home from my Rheumatologist and we were just discussing this. He says why are we so far off on discovering anything about this disease? That is a doctor who has so many Sarcoidosis patients asking that. Truly a scary thought.

Well I promised so many people, especially these three great people, that I won’t quit fighting for them and all of those of us that have this disease. I can’t quit! I won’t lie I have thought about giving up! I won’t give up! It isn’t me! I have to fight! Not only for all those people but for me! I give up on fighting, I give up on myself!

Like I have said so many times ” I HAVE SARCOIDOSIS BUT IT DOESN’T HAVE ME!” IT WILL NEVER WIN! I MAY NOT GET A CURE BUT IT WILL NEVER BEAT ME!!

For all of you that have been affected by LeeAnn’s death, which is many, don’t give up! LeeAnn never gave up! Andrea never gave up! Paul never gave up! I never gave up!

“YOU ARE NOT ALONE!”

Happy Birthday?? 52 Years? Wow!!

Here I am in deep thoughts and emotions.

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

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

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

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

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

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

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

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

Then the world stop!

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

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

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

So I moved back to New York.

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

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

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

It has been a struggle ever since then.

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

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

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

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

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

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

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

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

#YOUARENOTALONE

We all need help! Let’s be there for one another!

So this morning I woke up and been seeing so many of my Sarcoidosis family dealing with some truly tough problems. I want you to know I feel you. I understand. Most of you know that I am too dealing with many health issues also. 
But just because we are fighting so hard against these terrible diseases, I am still here for you . If I don’t answer right away I promise I will get back to you! 
Remember we are all family! I truly love my Sarcoidosis and chronic illness and rare disease families! 
We love together, we hurt together but #YOUARENOTALONE!
I am truly blessed and inspired by my Sarcoidosis and Chronic Illness and Rare Disease families! 
I know it is scary at times, believe me I do! There have been many days I cry! 
I have been seeing so many posts lately, especially my Sarcoidosis family that they have been having a tough time, I am so sad for you all, but don’t take my sadness as pity. I don’t think you need pity! I believe you all need LOVE AND SUPPORT. If that isn’t from your biological family. WE ARE HERE!! DON’T WORRY IF YOU THINK WE HAVE TOO MUCH ON OUR PLATE! Odds are we are just as happy and need to hear from you too. 
So the main reason I am writing this is to say REACH OUT and remember #YOUARENOTALONE! 
I TRULY LOVE YOU ALL!!! I NEED TO FOLLOW MY OWN ADVICE ALSO!!!

I hope I don’t offend anyone, just partially venting and really just want to help!!
I am writing this because I have been seeing so many people, especially in my Sarcoidosis Family, suffering. I just wanted to let them know not to give up as well as we, Sardcoidosis, Rare Disease, Chronic Illness families are here for each other! I am not a martyr at all! I just get so sad seeing people give up or feeling alone! 
I know many of us are doing our best, but I know I am not doing my best because too many people are still committing suicide, too many people are feeling all alone! Yes I hold myself to very high standards and I am a realist that I won’t touch everyone! But I feel that we as communities can work together to help each other out. I may be ranting but I am truly sad to see too many people not only suffer physically but just as important they are suffering mentally, which sometimes is worse! 
Do I have a solution? NO! Do I have ideas? Yes! As do most of you. So let’s try to work together! We do have a voice, we also have solutions! I personally know that my health is declining, I don’t want pity for that. I want to make a difference, as do most of the community. 
It is crazy, but you know what I found to make the biggest difference in my community? Two things:
1- Just a reaffirmation” I am here for You!”
2- Let them know #YOUARENOTALONE ! 
I am truly sad to see how many people in our communities that are more sad about the mental anguish of feeling alone!! 
This is not a post to put me in a spotlight either. The spotlight should be on our communities and those who need our help!!

I feel we need to figure out what we can do as a community and more importantly as a family! I don’t know if I can do this by myself. As a matter of fact I know I can’t! I am truly asking all of you for your support!!

As some of you may know we have started new online (virtual) Sarcoidosis Support Group Meetings. This is open for all Sarcoidosis patients and caregivers to discuss with others all the rough times and the good times and information about Sarcoidosis. We started this in December. We have our meetings on the first Tuesday and the third Thursday of the month. This is a safe place to discuss anything you may feel. Here is the start page with the faces and bios of our moderators. If you ever feel down don’t be afraid to contact us. We are here for you. Not just at the times of the meeting but we will help as much as possible anytime. If you feel you need more counseling please contact me for some counseling help.

I have a special link that will help with some of the costs for an online counselor.

Here is our start page for our National Online (Virtual) Support Group Meeting! You get a chance to see who our moderators are. If you click on them you will get to see their Bios as well! Thank you for all of your support!

https://ancan.org/sarcoidosis/

May is Mental Health Month- My Story!

May is #MentalHealthMonth. Here is my story!! #YouAreNotAlone !

May is #MentalHealthAwarenessMonth. Mental Health is very important in the Rare Disease Community and the chronic illness community. Many people have their stories about dealing with #MentalHealth. My story is about 3 years ago. My pain level was out of this world, it was a 9-10 pain level every minute of everyday. My doctors were telling me that there wasn’t much that they were able to do for me. so yes I contemplated suicide. I thought very hard about it, even planning how I could do it. If you know me, you know when I set my mind to something I will do it. So before I actually tried it I called my counselor and she told me to go to the ER room and declare yourself for a 72 hour watch. If you don’t know what that is it is a psychiatric watch for 72 hours for anyone who is contemplating suicide. It is not the easiest to do. Actually is kind of embarrassing! But it also saved my life!! I can truly say don’t worry about what others think. Don’t worry about being embarrassed! I still at times am embarrassed about talking about this time of my life. But I look back and say thank you I had someone to talk to. I also am grateful that even though I thought it would be better for the ones I loved to not be around, I really learned that is NOT true. It truly was a very dark time in my life. Will I say that I don’t get depressed ? NO. Will I say I am “Cured?” NO. Fighting mental illness is an everyday process. Don’t be embarrassed about your #MentalHealth challenges! So many have them too! I learned that if you discuss this you just might help that ONE PERSON!! That one person you may have saved their life!! I am writing this not to say I am better than Mental Health… I will never be better than mental health!! Everyday I deal with my Mental Health. I will never beat it!! All I can do is control it!! I have very bad days and I have good days. It is how I deal with the good and the bad that makes me who I am! I had a rough emotional day yesterday. I will have many more of them. I will also have some GREAT DAYS!! I cherish that I am still here!! I am also grateful that I have an amazing wife and daughter. I am also grateful i have a wonderful Counselor. One of the main reasons I write this is to let you all know!!!#YouAreNotAlone !!! I am here for you! There are so many people who are here to help. Don’t be afraid to ask for help! Asking for help doesn’t mean you are weak!! Asking for help makes you STRONG!!!

Life is always a work in process!

Sometimes life has ways to show you what should and is important in life.
Life loves to test you. It also loves to make you think. You see thinking is not a bad thing, it can be your friend. It can be overdone also. Sometimes you need to be alone in your thoughts, but not all the time. Make sure you ask for help when you need it. I know that sounds funny coming from me. But in the scheme of life make sure to have balance.
It seems like that is easier said than done.
But also remember that someone is there for you!! I am here for you all! I know that sounds like lip service but it isn’t!

I have been through a lot, I have even thought that I couldn’t go on. I am so glad that I never did anything to act on that.
I realize that life is worth living for. I know I would never want to have my wife and daughter to ever have to deal with that.

Do I ever have bad days and bad thoughts? Absolutely!

Will I ever act on it? I don’t know. I do know I will be trying my best to be a better me.

I am in my thoughts today and I had certain feelings today. Some good some bad. None that bad that I needed to act on them. But enough to make me think.

I can say I am in a place where I reflect on myself. I need to work on me, but isn’t everyone a work in progress?

I am truly grateful that I have people who support me. I also am grateful that I am there for them and anyone else who needs it.

1 Year, 1 Year- That one year of life that turns your life around!

I know I didn’t tell everyone about this. I did talk about my downgrade health, but I didn’t tell too many about only having a couple of months to live. There are reasons, most of all I didn’t want pity. I also want to live each and everyday like it is my last. But if I told everyone it may be my last people would of changed. Not that they want to it is just the way life is. I wanted to be treated like it is me, not the me who may pass anytime soon. I truly went back and forth with how I was going to handle this. I have been blessed and lucky to be me. Also to have this “extra” chance at life!

So you can see why it is a very emotional day and time. It being April only adds so much more to this. I am truly blessed to have so many great people in my life. I truly love and thank you all! I do have to say this one thing.. This has truly put my life in perspective. Also am I out of the woods? No! Will it get better? I don’t know! I do know that I am here and I never take that for granted. I really believe that I was put on this Earth for a reason. Some of that reason I know, but some other reasons I have yet to discover. I honestly don’t know if I want to know why? I do know I am here because of my family and my friends. I am also here to continue to fight. I want to believe I am also here to inspire others to never give up! Giving up is NEVER an option!

Today is a very emotional day for me! I know I should be happy but I am very emotional today. You see on this day last year I was told by my doctors that I am terminally ill. I was actually told a couple of days before this by one of my doctors. But this time last year I was told by 3 doctors that there was nothing they could do for me. Imagine going into your doctor’s office and see one of your other doctors there and another one on the phone telling you that you probably have only a couple of months to live. It truly was one of the hardest days of my life! The hardest part wasn’t me getting the news, it was having to tell my family, especially wife and daughter.
I was truly blessed and lucky that one of my doctors was able to find a specialist who has stabilize my living. I know it is not a cure, but it’s helped me live an extra 9 months.
I don’t know what the future has in store for me, but I do know I have been blessed and taking each day as a blessing. I love you all!

I Thought Staying Home Was Going to Be Boring.. Boy Was I Wrong!

I decided that due to my health I was going to concentrate on Volunteering as a Foundation for Sarcoidosis Research National Ambassador for statewide, New York, but boy do things change …

So this year started out with me getting another problem diagnosis.. something I will discuss at a later time. So with that I had to go on a higher dose of Prednisone and I also started to have tremors more pronounced. Some of it was the Prednisone doing it to me, and some of it is the progression of the Parkinson’s. It has at times even bothered my speech. I noticed it a lot at my FSR Ambassador training class. I know some of it is me being self conscious but I know I have been getting worse. I thought pulling back was good for my health. I realized after time all that did was get me depressed more and more. I was to the point of giving in. I knew I couldn’t and wouldn’t. II am too strong to do that! I needed to have some source of life balance. That is when I decided to go back to advocating!

With that being said I have been doing things to help FSR and also my organization, Sarcoidosis of Long Island mostly from home. I realized that there are too many people in New York that have Sarcoidosis.

That scares me and hurts me. Why you may ask? Well when I was misdiagnosed in 2004, I felt all alone. When I went through 4+ years of chemotherapy and radiation, I felt all alone. When I was finally diagnosed, Sarcoidosis, in 2011, I had family but had nobody to talk to about this disease. I vowed never let anyone else feel this way.

I know I can’t save everyone, heck I can’t even save myself at times. I also know I am not God, nor do I want to be. What I do want is to be here for people and I want people to know that:

YOU ARE NOT ALONE!!

So I decided that is going to be Sarcoidosis of Long Island’s montra! I had to make a plan on how will people actually know that Sarcoidosis of Long Island and Foundation for Sarcoidosis Research are here for them, the patients, the family, and the caregivers?

So I decided that I needed help and I needed to get my name out there! I have been looking for new and different ways to raise Awareness!

I started by going to the people that have been my biggest supporters Town of Brookhaven councilmembers, Valerie Cartright and Jane Bonner. I asked them for their help. I am not usually one to ask for help, but I knew that what I was doing wasn’t working enough. Then I went to my support from Suffolk County Legislators, Sarah Anker, Kara Hahn, Leslie Kennedy and of course Dr. William Spenser. I am so glad I did. I received so many great tips and great ideas.

Well let’s start from February 2019. I was scheduled to go to a Health Fair locally by Kara Hahn’s office. Unfortunately it was cancelled due to the weather but it truly was just a start for me and my organization.

My Town Council Members were amazing and gave me some leads like the talking to civic associations. That panned out, I received two invitations to speak at their association meetings in April.

Then the Jane Bonner and Valerie Cartright asked me to speak at the Talk of the Town local television station. I will be interviewed on March 13, 2019. It is a great place for me to not only advertise all that is going on but more importantly to raise awareness for Sarcoidosis and Sarcoidosis of Long Island.

YOU ARE NOT ALONE!

Then I received help from all of my Suffolk County Legislators so I can speak at their Board meetings. Then Dr William Spencer offered me to speak at the their Health Committee meeting both in March. So you would think that is pretty good and filled enough, wouldn’t you think so…

So me being me I went looking for more and more found me too. I guess good things happen to good people some times, not that I am good. I was contacted by Five Tier Media and Marketing. He asked me if I wanted to have a billboard for Sarcoidosis of Long Island on February 28, 2019. Well it was a special for Rare Disease Day. I was so delighted. I never thought that I would ever be able to afford it, but it truly was reasonably priced so I tried it. I am beyond grateful I did.. The Billboard is in Times Square, 42nd Street and 7th Avenue. I had 30 ads at 15 second for each ad. It was truly amazing! I will put a picture and a video of the Billboard for all to see!! You would think that was it for the Billboards, but no! We are actually doing a fundraiser with the Billboard on March 14, 2019, so I will be in NYC to see the billboard and from there I will be taking a VIP tour of Citifield to discuss partnering with the NY Mets for opportunity to fundraise and raise awareness. If you want to know more please feel free to contact me for the information. But I do have to say Rare Disease Day was truly amazing. I went to NYC on Rare Disease Day, saw The View and was able to mention Rare Disease Day. Met a great lady Brenda another Rare Disease patient and advocate at The View. She is truly amazing! We talked about how we can collaborate and help the community instead of working against each other. On March 24, 2019 I am being honored by TBRNEWSMEDIA as one of Town of Brookhaven people of the Year.

So March is pretty much a full calendar, considering I still have Dr. appointments for my declining health. I know I am doing a lot but it actually fuels me. I need to have a purpose, but I also need to balance my family too. I believe I am doing both, because all of my events are not far. I am trying to be busy, but be smart at it.

April is Sarcoidosis Awareness Month. so to say I am slowing down would be ridiculous. I will just start at the beginning of the month and go from there!

April 1, 2019- The View-

A bunch of us Sarcoidosis Warriors and Caregivers are going to the View. We wear our purple and let them know all about Sarcoidosis.

April 2, 2019- Buffalo Wild Wings Centereach NY 11720-

We are having a local restaurant fundraiser at Buffalo Wild Wings it is more than just making money. It is to truly raise Awareness for Sarcoidosis and the events that are coming!

April 7, 2019- KISS Westchester Sarcoidosis Walk ‘n’ Roll- 9:30am-12pm

This is the first of three Walks we are having in NY! This walk is being run by my good friend and fellow National Ambassador Kerry in Westchester. Her link is here to join: https://stopsarcoidosis.rallybound.org/KISSWestchester2019 .

April 9-10, 2019- The Today Show, Dr. Oz and Good Morning America-

Sarcoidosis Warriors are going to NYC to The Today Show on the 9th morning to raise awareness then in the afternoon we are going to Dr.Oz on the 9th. On the 10th we are going to Good Morning America.

April 13, 2019- KISS Queens/Long Island Walk/Run- 9:30-1pm

Number 2 of the Walks. This event is being run by another one of my friends and National Ambassador Cheryl is in Nassau County Long Island, Oceanside. Her link to join is:

https://stopsarcoidosis.rallybound.org/KISSQueensLongIslandWalk2019

April 14, 2019- Sarcoidosis of Long Island Support Group Meeting- Mather Hospital- Port Jefferson, NY- 6pm-8pm

We are celebrating Sarcoidosis Awareness Month by inviting anyone who wants to learn about Sarcoidosis. We will be having Town, County and State government officials. and others here to show their support for Sarcoidosis.

April 20,2019- 5th Annual Sarcoidosis of Long Island KISS Walk- 9:30am-12pm

The last of the Walks is being run by me and my Organization. The event will be at Heritage Park Center- Mt. Sinai Suffolk County Long Island.

Here is the link for more information: http://fjr311.wixsite.com/sarcofliwalk

So as I said pretty busy for the next two months. It seems I would stop there… Nah!!

July 13, 2019- Brooklyn Cyclones NY Mets Minor League team game-

Sarcoidosis of Long Island and the Brooklyn Cyclones will be joining together to Raise Awareness and Fundraise. Hanna Curtis,12, our little Sarcoidosis Warrior Sister will be throwing out the first pitch. She will also be having a day of her life: Check this out!!!
https://youtu.be/0tdZQMTXJV0

We will be selling at least 50 tickets to the game at $20.00/ each ticket
On-Field Pre-Game Presentation & Video PSA
First Pitch Opportunity- Great way to reward a volunteer
or use as an auction item prior to your game to help raise
funds
Host a FREE Activation Table on the concourse
Public Address Announcements promoting your charity at
the game
Charity Logo & direct link featured on our Charity Partner
page at BrooklynCyclones.com
Charity Logo featured on our Charity Partner page in the
2019 Brooklyn Cyclones Game Day Program

Have the chance to raise money at your Activation Table
Receive control of our “Winning Prize Wheel”!
We provide you Cyclones promotional items and you receive
100% of the proceeds
*Only one charity per game will be permitted

I am writing this not to brag. I wrote this because I wanted people to see that if you set your mind to do something even on a small scale statewide you can do it! I am truly trying a whole bunch of new things this year! I decided to get out of my comfort zone and try new things. Why? To let you all know:

YOU ARE NOT ALONE!

I may be overdoing it. Probably so. But I want to let others have a chance to find us! Too many people are dying from Sarcoidosis and too many have committed suicide thinking they are alone. I can’t let that happen!!

So as I said earlier I thought I would be staying home, but I guess not!!

Days are long and tough.

It is 5:50am and I am reflecting on life and what it has to offer. Lately my life has been up and down. Mostly down. I have been dealing with so much with having both Sarcoidosis and Parkinson’s.

I have been fighting for my life. I don’t say that often. Why because I don’t like to put any light on me. I am fighting just like many others in this world.

Well the last couple of days have been so tough for me. I am use to dealing with tough days , but it has been tough both physically and mentally.

I have been having feelings of why am I still here? I know that being sick does this to you but somedays the feelings are stronger than other days.

So lately I have been fighting harder and harder. I even wonder why I fight as much as I do. Thoughts go through your head, ” Would everyone just be better off if I gave up?” ” Would I be better if I didn’t have to fight anymore?”

Is it a good thing to think these things? No, but I am human. Sometimes I feel some people forget that. I feel I forget that.

I don’t let myself be a human. Just be a person in pain, be a person who is sick. I always feel like I have to be strong for everyone else but why shouldn’t I let someone be strong for me?

It is just the way I have always been.

So here is what I feel. I am in extreme pain! I hurt so bad that I just want to cry. Everyday lately! I don’t cry because I have to be strong for my family. I know that sounds bad, but I have to try to stay strong. I feel if I break up then my family will. It is not my family’s fault. It is just who I am. Sometimes to a fault.

So today I woke up in extreme pain. So much pain it feels like my head is going to explode. I should be use to this, but I wouldn’t wish this pain on my worse enemy.

I don’t feel like my family, not my close family, but my extended family and my friends, truly understands what I go through just to make it through the day. I am sure some people will say I am making something bigger than what they think it is. All I can say to you is ” Live ONE day in my shoes!” Just one day! Let me know how you feel after that one day. I am not trying to brag, I am telling you the truth. Almost everyday I am just blowing off my health and my mental state. According to everyone I am strong! I am a “hero.” Really?? I don’t think I am. I am just one person who is trying to survive.

I also get people saying to me ” If you are so sick, why are you going out? Why are you doing so much?” My answer is this ” Really?? I mean who are you to tell me how to live my life?? Wouldn’t you want to make memories? Wouldn’t you want to live your life with your family? I have an amazing wife and daughter. I want to be able to have my family to say he lived his life to the fullest.”

Just realize one thing! I am not living to make you happy. I am living my life for my wife and for my daughter. If you don’t like it… Oh well! Let me know the handbook of living with a terminal disease. I would love to see it!

So I know this much. I am going to do things my way. I am going to be me! I am going to be selfish at times. I am also not going to care what others think about how I live. It is my life! Not yours!

I know this is an angry post but if you know me at all you know I am me! I am not here to sugarcoat things for you! I am here for my family and more importantly ME! If you don’t like it! There is the door!!!

Yes it is harsh, but I don’t have time for negativity in my life!