My Sarcoidosis Journey Now Changes!

This is the first article I ever wrote not having a title first. You may wonder why??

Honestly this blog is going to be a rough one to write.

There will be negative parts and thinking, but such is the life of a rare disease patient, such is life of a chronic pain patient and such is life of someone fighting for their life. Just know because I am negative and things aren’t going well right now… I WILL NEVER GIVE UP!

I have been having a rough time lately. That should not be anything new at all. But this time is different. I know it is. I know I put up a front and push things aside and tell everyone I am fine and that everything will be fine, and that is usually true. I have been through some real rough times and made it through.

This time is different for me. I have been through COVID as well as been through many Sarcoidosis obstacles and even Parkinson’s and IBS battles.

Why is this different? Why do I feel this way??

Well you see there are a couple of reasons that I know that I am at a different place. Do I feel like this is the end for me (yes I know crass, but this is me)? NO. Do I feel like this is a huge change to me? YES! When I say huge I am not trying to exaggerate at all. When you been dealing with as much as I have, with my life experiences and most of all with my health issues, you learn a couple of things and one of those things and probably the most important thing is learning your body.

So here is what is going on with me….

I have been dealing with a lot of what may seem as small issues, but they are compounding to a bigger problem. Like I said I had COVID. Well that started a chain of events that have my body fighting daily. The virus put my whole body in a tailspin that is still going. My lungs are not as strong as they have been, my skin has a “rash” that has never gone away, my heart has been acting up even more than usual, and now my kidneys are very compromised as well as my bladder, we found approximately a dozen masses in my bladder and my kidney numbers are a mess and of course there is the problem called kidney stones. which haven’t moved in over a month. The common fix is blast them out. Well that would be the easy solution but the problem is those masses in my bladder. We blast that area we activate and even possibly move these masses. Which would cause even more problems. Such is the theme of my life now!

So you may say well that isn’t that bad. Well normally it wouldn’t be that bad but here is the problem, Nobody knows what to do. Not only that, but I can tell my body is fighting but I can feel the energy being taken away from me even more now than ever before and more of my original problems are happening more often than ever before. My aches and pains have hurt more and more frequent than before. My colds are hitting me worse and don’t go away that easy if at all.

My body is trying… but how much fight does it have left? The fatigue is more exaggerated than ever before as well. The fighting is getting harder and the pains are getting stronger. What were once minor pains are now hurting so bad that I can barely use some of my limbs. My right hand is almost useless at this point. My knees and ankles feel like they have needles in them at all times. Will they get better… Maybe.. Hopefully…

With all of this going on my mind has been in a bad place, which makes sense of course. I have been having some real tough fights with my brain lately. Sometimes I win! Sometimes I lose! But each time it takes so much out of me.

Life is tough for so many people and I am truly grateful for being here on Earth and for doing the things I can do. I am also noticing that I need to get stronger. I don’t think just physically, but more importantly mentally.

I have been reading how so many of my Sarcoidosis and Rare Disease friends have also been struggling as well. I hear you, I feel you, I love you!

My mental fight has been the toughest for me. When you get your mind on the fact that your body has limitations, you start to feel more limitations so your mind gets in this funk. So you have to get control of your mind so it doesn’t give up. That is the fight I am in now. Will I win or is it even a fight that is a win or lose battle. I don’t know about that yet. I know it is a daily battle that takes more out of me then I have ever fought. It is also a battle that is tough to fight when you are fighting a physical battle as well. So many times it feels like it is a losing battle as well or a battle that I am too tired to fight now. Everyone is allowed to have these doubts. It is okay to not be okay. That is an emotion people say that you shouldn’t have. I say if you don’t have these emotions, then you are not fighting the right battle.

My mental state has been so fragile lately. I have been thinking about both of my parents and their fights to stay alive and their fights that ended up killing them. I started thinking about how young both of them were when they passed. How close I am to their age when they passed. I know I am not them and they had their own different battle, but it still goes through a person’s mind when you are in constant pain.

So when I say that I know things are different I say this because I know my body better than anyone ever will. I know that the fights are getting harder. I know that the pain I have in my hands just to type this is excruciating, I know that my head hurts more than ever, and I also know my body is extremely tired. When I have had battles before it never felt like my physical and mental parts were fighting such a tough battle at the same time. I am a strong person, have been since a child, but how many fights does a body have left. You wonder what is going to be the breaking point and you wonder if just going into your own bubble is the best thing. Then you realize the only thing to do is what I always have done… fight! What else is there to do? Giving up is not an option. .

But here we are.. I have fought so much and I will keep fighting until I die. When that is I don’t know? Nobody does except for the person above. Until then I will try to keep advocating as well as helping others in anyway possible. One thing I am also trying to do is teach others everything I know about advocating and also Sarcoidosis. I want to make sure that this disease has as many advocates as possible. My time as advocating has been amazing. I got to meet some great people who I call my family and friends. I also would like to think I made a difference in someone’s life.

This is NOT goodbye, it is I need to figure out what is the best for me. It is trying to figure out what I can do and when I can do it. It is also a time where putting myself first is the right thing to do.

I know I have started working with other organizations, but I always let them know if I can’t do something I will let them know.I just want to be able to help as many people as I can as long as I can.

I went to my Pulmonary doctor yesterday. He and my Sarcoidosis doctor and I were on a conference call. The lowdown is COVID-19 exasperated my Sarcoidosis and Parkinson’s and it also gave me new symptoms. These symptoms are scary, blockage in a major artery going to the heart, kidney Sarcoidosis, which I never had before, and the scariest is Sarcoidosis in the heart. I had Sarcoidosis in the fluid around the heart but now it is in my heart now. I am on 60mg of Prednisone to hopefully slow down the full body Sarcoidosis flare. My lung test is 81. The last time my lungs were this bad was when I had COVID and before that was 6-7 years ago.

This is truly a tough pill to swallow but like I said earlier when you have a rare chronic disease you know your body and you know your signs. I am going to be careful about what I do and don’t do, but it won’t stop me. It will slow me down but I can’t stop now. I need to keep going not just for everyone in my community but for me also. I need to keep going. My community needs help. One great thing is that Sarcoidosis have some great advocates and I am proud that they are going strong. Makes me happy and proud. I truly hope I had something to do with that. I hope I cleared a path for others to follow and

This year has been more than tough for so many people with COVID and all the stress of what is going on with social injustices that have made life so tough. We as a community need to join together and help each other and respect each other also. We need to make sure that we all truly understand what each other is going through. That is the only way we are going to move forward as a community and as a nation.

Living as a Rare Disease Patient and Advocate During COVID-19 and The Protests

So here I am sitting in my basement looking back at the year 2020 and saying WOW! Who would of expected what has happened in the past six months. I sure wasn’t ready physically and mentally.

So I know we all have been dealing with so much stress. I understand and I am here for you!

I am, as you all are, been trying to deal with this pandemic and now with the yet again terrible treatment of people of color by police officers and by others. As I am an advocate for rare diseases, especially Sarcoidosis, I am an advocate for equal rights. I will write my full feelings on this issue at another date.

So when January started there was so much hope, not only personal hope but also hope as an advocate. We had so many plans and we also did many live meetings with government officials. Even in February, I went to the FSR Advocacy training in Washington DC. It was so great to see so many other Sarcoidosis Advocates, but I would rather say that they are friends. It was great talking and passing on what each other is doing and what they had planned.

Then everything broke down and quickly.

The pandemic hit and it hit hard. I live in the hardest hit state in the country, New York. With NY being so population dense it was so easy for transfer of COVID-19. So as soon as I heard about how hard we were being hit I self quarantined.Even before we were mandatory! But unfortunately, I to this day don’t know how, I started getting sick. It started with a sore throat, trouble breathing, then stomach issues (even more than my usual problems), then I was getting chills, rash came, headaches, but the worse was a fever. I don’t get fevers, my normal temperature is around 96, so when I had a fever I knew I was in trouble.

So yes I had COVID. My doctors put me on antibiotics right away. I was even quarantined from my family. I was stuck in bed in our room with family bringing up my meals and I had a bathroom connected to the room. My wife had to sleep seperately from me for 4-5 weeks if not longer.

Things were very rough for me for awhile. My breathing became very heavy and it was hard to breathe. With Sarcoidosis in the lungs it is already hard to breathe, but I can honestly say that having COVID was one of the worse things I had to endure ever. I know that people will say, are you kidding? No I am not kidding at all. I was lucky that I didn’t have to go to the hospital, although at times some of my doctors were recommending me to go. I was told by other doctors that if I went to the hospital in New York it would be a death sentence. Imagine that?? Going to the hospital is a death sentence?? Can you imagine hearing that?? Well there became a time where my breathing was so struggling that I can honestly say I wished that death would take me. It got so bad my wife had to come into our room and stay with me overnight to make sure I kept sleeping and most importantly I was breathing. As much as it was stressful to me,it was extremely stressful to my family. They had no control or any answers on how to help me. I remember on making a decision on whether or not to go to the hospital. I remember seeing the sadness and horror on my wife’s face anytime the hospital was brought up. The thought of never being able to see me again was so hard on my wife and daughter. It was weighing on me also. I was wondering if I would wake up in the morning and that was every morning while I had this virus.

It took me another 5 or 6 weeks to get rid of all of my symptoms. It was real tough. Like I have said many times, I wouldn’t wish getting COVID on anyone. I have been through 9 surgeries, Sarcoidosis, IBS, Sjogren’s, and Parkinson’s. I have been deemed terminally ill, but I have never felt so bad except when I had diverticulitis, a hole in my colon and sepsis all at once in 2012, which so happens to be the last time I had a fever.

So here we are in June, I still have a burning feeling in my lungs. It really hurts. My pulmonary doctor believes as do some of my other doctors that I have permanent damage in my lungs and possibly other parts of my body. All I have to say that COVID is the gift that keeps giving. Thank you COVID!!! NOT!!!

Life has been strange. I have only been out in my backyard to get some sun since mid March. I have only been in the car one time since end of March. All of my doctor appointments have been teleconferenced. Life has been changed so drastically and probably will be for life.

If anyone would of told me that we would be in a stay in for going on 4 months I would of though you were crazy. Just think about it this way, at least having a chronic rare disease helps you deal with this quarantine/ stay in better than someone who is healthy and hasn’t had to stay in for any period of time. We can adapt better as chronic patients because we at some point or another have had to stay indoors, of course some of us more than others.

How have I been handling this quarantine/stay at home requests?

Well I have to say it hasn’t always been easy. If you know me I am very outgoing, even though I am on disability and am home a lot of the time for over 5 years. I do get anxiety and depression. But I was always able to go out to get that personal contact. But now not at all! This has been the hardest thing to get use to. I love reaching out to patients and caregivers face to face more than online or by phone call. I am learning and adapting to to this each and everyday.

One thing that has helped me is having our Sarcoidosis (Virtual) Online Support Group Meeting. That has been a Godsend to me. It has helped not just everyone else,but me very much so.

Now what we thought was going to be the start of reopening in phases, may be sidelined. All of a sudden we get the Protests for the unlawful killings of people of color. This has been a very tough part of life that we all have to deal with, whether you have different opinions on it or not it still raises anxiety or even depression. Now these protests have consequences, with COVID still very active in the United States and people protesting we could or probably will have spike in the COVID cases so that also will also raise so many more concerns.

Just a little about the protests from my point For me what is going on with the police and with people of color is such a travesty. I also think we as a country need to hear but more importantly really listen and act on it. The time is now to do something. Okay enough on that.

These past couple of months have been hard on so many people. I am no exception to this!

I have fought real hard to beat COVID both physically and so hard mentally. To think you could die at anytime due to being terminally ill, then having to face COVID head on took a lot out of me.

I didn’t even post about it because I couldn’t deal with people texting, messaging me or calling me at the time. My whole focus was to get better. That was and is priority number one!

One thing I do want to say. It really made me angry and sometime even made me cry!

To all of you conspiracy theorist.

This Virus is real! To you that think this is fake or overblown come talk to me! Let me explain this virus to you. This virus systematically attacks your whole body. While it does this it still attacks the areas that were already attacked. To you who compare it to the flu, you really need to educate yourself! All I can say is that if we don’t open the right way or if we don’t protest the right way, (social distancing and masks and gloves), we could see this kick right back up!

So we are here in our new normal! What does that mean? It is very simple! It is something I am not new with! We adjust, we fight, we move forward and most of all we love each other, each one of us!

Be happy you are living!! Live smart!!

Mental Health Links

Crisis Text Line:

Text CONNECT to 741741

National Suicide Prevention Hotline:

1-800-273-8255 .

We are here 24/7 with free, confidential, and anonymous help! Our highly trained staff and volunteers provide immediate assistance, compassionate support, and resource referrals that can put you on a path to healing. Texting on the Lifeline, Alcohol & Drug Helpline and Military Helpline is available 8am – 11pm PST daily. We’ll reply as soon as we open back up. Please remember help on the phone is always available 24 hours a day, seven days a week. Interpreters available. We can all help prevent suicide. The Lifeline provides 24/7, free and confidential support for people in distress, prevention and crisis resources for you or your loved ones, and best practices for professionals.

National Suicide Prevention Lifeline (Spanish)

(888) 628-9454

National Suicide Prevention Lifeline (Options for Deaf and Hard of Hearing)

(800) 799-4889

Now Matters Now:

https://www.nowmattersnow.org/help-line

Direct advice for overwhelming urges to kill self or use opioids

— Shut it down —

Sleep (no overdosing). Can’t sleep? Cold shower or face in ice-water (30 seconds and repeat).* This is a reset button. It slows everything way down.

— No Important Decisions —

Especially deciding to die. Do not panic. Ignore thoughts that you don’t care if you die. Stop drugs and alcohol.

— Make Eye Contact —

A difficult but powerful pain reliever. Look in their eyes and say “Can you help me get out of my head?” Try video chat. Keep trying until you find someone.

Video Guide (if you would like help following these steps). Here is a guided Eye Contact video to compliment the Guide.

*Not medical advice.

National Parent Helpline:

1-855- 4A PARENT

(1-855-427-2736)

Being a parent is a critically important job, 24 hours a day. It’s not always easy. Call the National Parent Helpline® to get emotional support from a trained Advocate and become empowered and a stronger parent.

National Alliance on Mental Illness:

1-800-950-NAMI (6264) or info@nami.org

The NAMI HelpLine can be reached Monday through Friday, 10 am–6 pm, ET

The NAMI HelpLine is a free, nationwide peer-support service providing information, resource referrals and support to people living with a mental health conditions, their family members and caregivers, mental health providers and the public. HelpLine staff and volunteers are experienced, well-trained and able to provide guidance.

• They understand, many from their own experiences, listen and offer support.

• They are informed on NAMI Programs, NAMI Support Groups and locate your local NAMI Affiliate.

• They are trained to help identify the best resource options for your individual concern.

Important Mental Health Links

• They are knowledgeable and a source of accurate information about relevant topics.

• They care.

TRICARE:

https://www.tricare.mil/CoveredServices/Mental/CrisisLines

Military Crisis Hotlines.

http://www.tricare.mil is an official website of the Defense Health Agency (DHA), a component of the Military Health System

TRICARE is a registered trademark of the Department of Defense (DoD), DHA

American Psychological Association: https://www.apa.org/helpcenter/crisis

Need to talk to someone? Specialists are available for confidential telephone counseling.

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 #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.