Life Always Takes Turns You Never Expect

I have spent so many days reflecting on life and where I am now to where I thought I would be. Of course some good and some bad.

Life has a way to changing you and if you let it, you could let it beat you down or you can go with the changes and adjust to them or you can give up or fight the changes in your life. Sometimes fighting in itself can be good or bad.

I believe I have been through everyone of those decisions and actions. I am no better than anyone else. I go through good times, bad times, and some in between times. Since dealing with these illnesses, from 2004 until now so many things have happened.

So many things in my life have happened that I would never ever would of expected. When I initially got sick, my whole life got turned upside down. The real problem was that I let the diagnosis run me. I didn’t think I acted. I didn’t look into what was happening to me, I just reacted to what the doctors said. I wasn’t advocating for myself , I didn’t ask questions, I didn’t do anything to actually make sure the doctors were right or if my initial diagnosis was right. I can honestly say that I just was trying to understand what was going on that I forgot to think about me. I forgot to understand what I was going through. I didn’t question anything, which isn’t who I am. I just did, not ask.

So in 2011, I was diagnosed with Sarcoidosis. When I was diagnosed and told it won’t be bad. Just some prednisone and I will be feeling better. So when I started looking into it and I was going on and things weren’t getting better I started to really find out information on the disease. When I was told I had Sarcoidosis, not Cancer, I wanted to find out more about this disease. I didn’t want to be a victim. I wanted to know how to fight this and what to expect. I also looked for specialists in this disease. I became active in my treatment not reactive.

So back to why I am writing this today. I have had so much time to reflect on my current life, my fight against this diagnosis and every new diagnosis that has come. I became proactive not reactive. I decided I had to fight this because giving up was not an option. I started reading and asking questions on things I had no idea what it meant.

The biggest thing in my life of course was going to change my life but I had no idea how much. Having Sarcoidosis and the many other diseases changed my outlook on life, changed my emphasis on what meant and still means the most to me. I have learned so many new things that if you asked me when I was younger this is where I would be I would of thought you were crazy. I grew up learning things, many business oriented, but now I still use some of my business expertise, but most of that went to the back burner to learn how to help myself at first to learning how to help others.

I had to re-program my mind which in itself is hard in your 40’s, but to start from scratch to a subject I never liked in school, Science. I had to learn chemistry, what meds go with what and what those reactions were or are. I had to learn biology, I needed to find out what would happen to my body when Sarcoidosis attacks it. I needed to learn nutrition to make sure what my body could handle and to make it stronger. I had to learn Earth Science, to learn how the environment affects my disease. I never thought I would need to re-learn so much Science.

So all these things bring me to where I am now. Today I was thinking about what I have done , not the look at me things, but the things that made me a better person and be better for others as well. Each accomplishment has been made me a better person. Made me a better advocate, made me a more sympathetic person as well.

When I was younger I would never think that I would write one book nevermind two books. My past was hard to live, so for me to re-live it was so tough. Most of it I tried to forget about. So why write the first book? I felt and still feel that to actually know me you need to know what made me who I am. I also found out putting it on paper helped me to deal with my past.

I also never thought I would be a published author in magazines and online articles. I also can’t believe I has had the impact I have had on the community. Not to be braggish at all. I never wanted to be the “one” or the face of a disease. There are over 200k faces of Sarcoidosis. But I do understand to get what we as a community want and need that someone needed to put a face to a disease. I was very reluctant at first. Then after being told that it was needed, I started to be more visible.

When I became an advocate I was putting myself all into raising awareness and government awareness. I spent years doing it and feeling confident at what I was doing. But things change. Health conditions change as well. I had to adapt to my changes in health and also to a pandemic that changed the whole landscape of advocating.

I tried to adjust and try to advocate in different ways. Some times kicking and screaming to change, but I found out that there are so many different ways to help the community. I started to go after research, and if you know me you know that was the last thing I wanted to do. The funny thing is that I actually like it, don’t tell anyone I am loving it. I started working on different parts of research and also started working on the mental aspect of this disease and what it can do to hurt, as well as ways it can help the community. I have also got into more of the medical side of this disease. The biggest surprise to me is that I helped on a medical paper with some of the best people I have ever met. I actually am so proud I was even a little part of this. I learned so much by changing who I am and what I stand for. I learned to adjust to the times and as well as the means of what I could do and couldn’t do. I also am very proud that I went out of my comfort zone and took on more and more opportunities and I didn’t limit myself to only things I do know and take a chance on things I thought I didn’t know. I am proud of wwho I am now. If it sounds like I am bragging oh well. Maybe at times I need to brag so I do understand I am worthy.

There are many times in my life where I never thought I was worthy of any of this. I would of been part of the background and happy about it. I talk about being worthy, because it wasn’t anyone else’s opinion on me that brought me down. It was my own opinion of never feeling worthy to anyone else in anything I did.

It is very difficult for me to believe I am worthy of anything. I feel like I am no better than anyone for that matter. I have always been this way. It truly isn’t anyone’s fault but my own. I didn’t have people saying to me that I wasn’t worthy, I just felt that way. It is something I put on myself.

While having this time to reflect has made me better understand myself and really am working on loving me. Even though I go through one step forward and two steps back at times I have realized that doesn’t define my worth. What defines my worth is how I feel about me. I also learning, somewhat that is, to try to take compliments better. That is tough when for so long you didn’t even think you deserve them.

I will always be a work in process. That work is ever changing. That work is evolving. That the person I thought I would be is also ever evolving, making new decisions and don’t be afraid to take chances, don’t be afraid to do something you never thought you would do. I will fail, but it is better to fail at trying then to never have tried at all. So I will keep on trying to better myself, keep on trying to make changes to better myself. Try to be the better me! I know there is so much room for improvement in me. I just want to be a better me. Be the better version I can be proud of. But also knowing this may be the best me. Last but not least I am working on being proud of me. That fight is ever going!

What #YouAreNotAlone Means to Me…

https://www.youtube.com/watch?v=CZJvBfoHDk0

Let me start off by saying I know so many say these words. I am not saying they do not know what it means at all. I believe we all have different interpretations of these words; most are close to being the same. Others have a totally different meaning, which is great. 

What I am going to say is what these words mean to me.  They really hit me hard. Why? Because even though I had and have many people in my life that are caring, loving amazing, wonderful and inclusive. I have for a long time felt alone. It is nobody’s fault, I do not even blame myself, though I still feel alone at times.

Life has been a rollercoaster ride. I have dealt with some things that others have not. Does it make me any worse or any better than anyone else? Absolutely not. We all have our pasts and present and futures. We all have our own feelings, and we should never put anyone down or say how yours were worse than any other person’s life.

We all have our triggers in life. We also all have our point of feeling and being alone. Being alone also has its own different meanings.

So back to what being alone means to me. It has different meanings at different times. Being alone is such a scary feeling. I could be in a crowded room and feel alone. It can come on to me out of nowhere. Whether it is my health, my anxiety or my depression it happens at different times and at any time. I have been dealing with this for many years. I believe and know that when I was young, I had depression and anxiety, it just was not talked about back then. How could I not? No excuses here, but when you are five years old and had to deal with having leukemia, and not being allowed to go outside or be a kid, in the sense of not being active, I learned to deal with being alone. Like I said it was not anybody’s fault it was just real-life situation that everyone tried to make the best of it.

Being alone was normal for me as a kid. Was it a good thing that I reverted to being alone? Probably not, but the body and mind of a child adjusts to what you have in front of you.

By the time I was able to go out I really did not have the skills to meet people. Most of my childhood friends were people who came and talk to me. As I grew up, I started to talk to more to other kids. It was in Junior High School I started to really try to go out and meet others. If you would ask my family, they would have said I was more outgoing earlier in my life, but that was overcompensating for things I did not know how to do. I would exaggerate and be overly friendly to make sure nobody knew the little scared child that was there. You see when you do not go to school from kindergarten until half of fourth grade, there were many times you are alone. As a coping mechanism I got “use to it.” You adapt. You learn to “accept.” But as a child what is accepting? For me it was put everything away in the back of my mind and not think about it. There are so many things in my childhood that I do not remember. I am partially glad about that, but some things are coming back slowly but they are.

Let me get back to “being alone.” The meaning of this to me is that even though you could be surrounded by many people, you can still feel alone. For me I am dealing with different medical diagnoses as well as depression and anxiety, some of that because of my diagnoses and some because of my insecurities I have had for so long. For a long time, I was hiding those insecurities and feelings. Sometimes I acted out because of my insecurities as well. No matter what I did growing up it was never enough. Not to anyone else but to myself. Even when I did something that someone was proud of me, I would find fault.

Why? Honestly, I do not know. I am still working on that. As a matter of fact, I still do that to myself. Not that anyone sees that side of me, or if they do it is more subtle then how I feel toward myself on the inside. I have always been hard on myself. I guess that is because I felt I was always catching up to everyone else. Let me say this, it is a terrible way to live. I wish I could describe it better on here or even to my counselor, at times, I beat myself up over it.

When it comes to feeling alone it come in different waves. Somedays I feel nobody understands me. I feel like no matter what I say people will not understand or even care. Ever been asked “How are you feeling?’ and think “do they really want to know or are they just trying to be polite?” I then usually go to my standard phrase “I am hanging in there.” Whether I am or not it is easier to say that then having to explain to them what is really going on. I have this internal fight with myself on whether to tell them the real me or tell them what I feel they want to hear. People get tired of hearing this hurts or that hurts. People start to avoid you if you are always negative. So, you lose if you say too much about your illnesses or you lose when you just, please people and saying, “I am hanging in there” or “I am fine.”

When I was diagnosed with Sarcoidosis, I had no clue of what this disease entailed. I was under the perception, some of it by others and some because I wanted to be okay as well, I was told “At least it is not cancer.” Or “you take some prednisone, and you will be fine in 6 months or so.” Both are wrong statements, well at least for me. This battle has been long and hard and emotionally and physically draining. I have fought hard and continue to do so. That much I know is part of me. I will keep helping others as much as I can. I will try to keep people happy and hopefully encouraged to do so themselves.

What I cannot promise is that I still will not feel alone. It is something I fight almost every day. I know many would not think of me this way. I have perfected the fake face and the fake feelings. Well actually I do not know if fake is the right word. It feels fake to me. In my heart it is not fake. I really want to be happy; I want to feel like I am not alone, I also want to feel like I am helping others.

So, this brings me to this. This weekend I was at a Sarcoidosis Summit, while there I was telling people how I do not like to be seen as the “Voice of Sarcoidosis.” I do not like when people compliment me, do not get me wrong it is nice to be noticed, but it truly is not the reason why I do the things I do. I say this a lot. I say if I could stay in the background, I would love to.

I never believe or believed I am better than anyone else. I always say we all have our own battles, and we fight those battles a different way. When it comes to advocating, I get embarrassed when I am complimented. That is because of the feeling of being alone and to this day the feeling of being inferior. I also never wanted to what they call “in front of the camera” literally or figuratively. I know and understand what people say they need a face to the story, but I honestly say to myself “Why my face?” I do not feel and probably never will feel that I should be the face of Sarcoidosis. I think that is my self-trying to stay alone.

One reason I do talk about what I have done is because I want to let other people in our communities know one person can make a difference. Know your words and story matter. Know that if you touch one person’s life you have made a difference.

I want to end this by telling you all a couple of last words. Do not think because you are with someone, you cannot feel you are alone. Many people are like me and feel alone in crowds. Find out something that will help you when you are alone. It can be music, movies, reading, counselor or just time to yourself to find yourself. Sometimes I just need to be with me and in my feelings. I need to re-organize my thoughts at times.

When I say #YouAreNotAlone I mean we are here for you. I am learning to open myself up. If you do not open yourself to others, you will never be able to feel like someone is here.

Finally, please do not be afraid to ask for help! It does not make you weak to ask for help. It makes you strong that you can realize when you need help and ask for it!

I say this all the time. But Men you do not have to be alone! You can ask for help! You don’t “Have to Be Strong or Suck it Up!” You are stronger to ask for help!

#YouAreNotAlone

Mental Health and Stigma According to Me!

I have been very much an advocate for Mental Health not for notoriety at all. I believe it is important to me that people in all communities face the fact that your Mental Health is as important if not more important in your overall health.

Just to let you know everything I write on here are opinions, just that, my opinions. I don’t have a counseling background at all. What I write is only what I am thinking at the time. If it helps one person then it was all worth it. Just know when I do write it is never easy to put my thoughts on a screen. I am just saying nothing or no one in your life hasn’t had to make sacrifices and had something they had to face. What is that great saying? “Don’t judge a book by its Cover!” That is absolutely truth!

Mental health has been in the forefront lately, whether it is due to the pandemic, or athletes speaking up or just that many health communities are speaking up and trying to make sure that we address the need for mental health in our full body treatment.

Many people know how mental health has affected me personally. For those that don’t know in 2015, I thought about suicide. When I mean thought of I mean I planned it. I was ready to commit suicide. That sounds weird to say at times. I still tear up thinking about those times. If you know me you know that I carry out many of my plans. So it was and still is frightening. I am lucky I had and still have an amazing counselor who I called that day and she was able to talk me out of it and get immediate help. I went to the hospital and put myself in a seventy two hour watch. It helped.

Did it cure me? Of course not. Did it change me? Yes, but I won’t lie there are times still that I believe it, suicide, might be the best answer. It did put worries and troubles into more focus and made me capable to handle things better. Am I cured? ABSOLUTELY NO! Will I ever be cured? Now that is a question I probably will never ever be able to answer.

Mental health has so many components. I am not a counselor but as a chronically ill patient I know that my mental health is very complex. As a person who has been through so much as a child and adult just makes the complexity even higher. I understand many people have had it worse than I have. But mental health is all relative to what a person can take both physically or mentally. I will never compare myself to anyone, or say my experiences are better or worse than anyone else. We all go through life differently. Please never feel like your reasons of depression or anxiety is of less importance than anyone else. We all have our own battles in life. Just because our battles are different doesn’t make mine any more important than yours. We all have our own “boiling points” in life.

I have been dealing a lot with my “demons,” whether it is from what happened to me or I did myself, in the past and present. Let me first say I wrote the word “demons” and looking at it now I don’t believe that is the right word. There should be a better word, there probably is but I just can’t think of it now. So let’s go with this.

Life has been rough, don’t get me wrong I don’t use it a crutch or as an excuse at all. It was what it was. After looking back at it recently I thought that I probably had suicidal tendencies as a child, but never acted on them or even let anyone know it. One thing I have to say is I was and still am great at masking and hiding my true feelings. Nobody really knew what I was thinking. I know that it is not a good thing to do, but each person handles stress and anxiety differently. For me I put so much of my childhood away in the back of my mind so I wouldn’t have to think about it for a long time if not forever. My childhood is so spotted by my memories. It is sad. I want to remember but they haven’t come back. I guess that is a defense mechanism.

I know that now you can’t run away from pain both physical and mental pain. I face so much head on but there are more that I don’t want to face, or for that matter do I feel like I need to face. I know things in my past have affected who I am now. I am not running away from things at all. I just don’t want to rehash some things. I am not embarassed about anything. What I am is disappointed, sad, and outright done with things that have happened. I have so much to deal with that I don’t have the time or energy to bring up the past.

I have a couple things that I learned in life. Too many people judge you without even knowing the details. Also we can’t change the pass, all we can do is become a better person for it. Another thing is judge people by their actions not their what they say or what they did in the past. We all have things we arew not proud of, but if you judge that person by what they did and not what they are doing you truly miss out on how amazing that person could be. That goes to judging yourself as well. If you keep judging yourself on the hardest times you will never live the great times or acknowledge that you are a good person. I know that by experience. Believe me! Life isn’t perfect, but it doesn’t have to be a tragedy as well.

So let’s get back to the topic of Mental Health especially the stigma that it brings with it. First of al and most importantly if you need help with your mental health it doesn’t mean you are “crazy.” It also doesn’t mean you are “weak.” If anything it means you are “STRONG!” Why do I say that? One of the biggest strengths is to admit when you can’t do something on your own. Remaining vulnerable and the acknowledging of that vulnerability is a major step in life.

Stigmas in my opinion are just a way to be lazy and make excuses for something or someone that you don’t want to face. Stigmas are a terrible to use. It is a way to bring down another. Mental Health should not have a stigma of any kind to it. Our brains are an important part of our well being. I have said on many occasions that when you get sick either physically or mentally you have a couple of choices. You can roll into a ball and give up or you can fight. That is up to you and your brain to decide what is best for you.

I try to ask myself this question when something or someone challenges me. “Do you want to fight or do you want to give up?” Only you can answer that question and more importantly can decide what path you are going to walk. When you acknowledge that you can’t answer that question it is the first step toward strength and taking control of your life. Having a counselor can do so much for a person. Just having that someone that you can talk to you and offer suggestions with an open mind. When you are involved with making decisions when you are overwhelmed is almost impossible to do. So asking for help takes courage and strength.

I know this post says a lot and many people will be saying “Why did you write this? It goes back to the beginning, you are the only one who can decide your mental health. You can ask for help, but you are the one who decides how your mental health is going to help or deter your life.

Lately I have been going through a lot. You might say “Don’t you go through hard times a lot?” Yes I guess I do, but some times are harder than others, both physically and mentally.

As much as I write this for others I also write these for me. It is also to make sure my mind is in the right place. I am just like you guys, I have hard times just like everyone else. If I didn’t I would be lying. I have fights with myself very often. When you live with depression and anxiety your battle within never stops. What one does or doesn’t do is that contollable aspect of your life.

I have come to a realization that nobody’s life is perfect, or neither is mine and it never will be. What can be controlled is the fact of how you fight and what you fight to make your life perfect for you. When I say “Perfect for you” I mean in the sense of what will make your life better, what will make you happy. We all search for perfection, it is a concept that I finally understand that perfection is not totally attainable, but happiness can be if you let yourself be okay with what happiness is for you now.

“It’s up to you today to start making healthy choices. Not choices that are just healthy for your body, but healthy for your mind.”― Steve Maraboli

 “It doesn’t have to take over your life, it doesn’t have to define you as a person, it’s just important that you ask for help. It’s not a sign of weakness.” — Demi Lovato

“Your illness does not define you. Your strength and courage does.” –Unknown

Always Coping with my Mental Health

My Patient/Patient Advocate Journey

My Patient and Patient Advocate Journey starts in April 2004, in Florida. You see being an avid runner since 7th grade and that was a huge part of my life and opened so many doors including a scholarship to college.  So, by the time April 2004 came around I was totally in tune with my body. I was running 4-5 miles a day at the age of 36. I was going out to do my daily run as I have done each morning before work. This day was different. I woke up not feeling well. When I say not feeling well, I am saying trouble breathing and just a heaviness in my chest. I had felt a smaller case just like this before but went out to run and things always seemed better.

This day was much different. I started my run and got to about the quarter mile mark and had to stop. I felt like I could not even walk anymore. The pressure on my lungs felt like I could not breathe anymore. I was wondering if I was dying. Looking back maybe I was exaggerating, but then again after receiving the worse news possible a month later, maybe not.

In May 2004, I thought I heard the worse news ever in my life. I went to my doctor and was told “You have Lung Cancer.” The news caught me off guard. I never smoked; I was in great condition physically. How could this happen. I was told that they could not do surgery as the masses were in every part of my lungs. I was told the best possible treatment was a “cocktail” of chemotherapy and radiation. It was a new treatment that they have had some success with to fight small cell carcinoma. So off I went and started treatment. Well let me tell you that was one of many mistakes I have done with my diagnosis odyssey. I went through 4 years on and off from chemotherapy and radiation, for which I found out 7 years later was all for nothing.

That is right, for nothing. In 2009, I moved back to New York after being told I was in remission. In 2011, I had some stomach issues, I have IBS as well. I went to the emergency room, while being checked up an X-ray showed masses in my lungs. Here I am thinking I had Lung Cancer again. I was told to go to a local cancer center. I went and they did a biopsy of my lung, to find out that I do not have Cancer. I have a rare disease called Sarcoidosis. I was like what is that? Only to find out that my brother-in-law has it as well and he was doing amazing and in remission, my wife and I thought okay cool this is not so bad. We were even told by a doctor “At least it is not Cancer.” Boy were we wrong…

My symptoms kicked in for me in 2011, they were trouble breathing again, then some new ones. The new symptoms were pain in my joints, trouble with double vision, skin lesions, and trouble with remembering, with thinking itself and motor issues. By the time I was diagnosed with Sarcoidosis I had already was diagnosed with Sarcoidosis in 75% of my body.  The cancer treatment somewhat helped and harmed me in the same breath. The chemotherapy helped the masses from growing but the radiation made my body weaker and helped me get Sarcoidosis in other areas of my body.

What is Sarcoidosis? Sarcoidosis (pronounced SAR-COY-DOE-SIS) is an inflammatory disease characterized by the formation of granulomas—tiny clumps of inflammatory cells—in one or more organs of the body. When the immune system goes into overdrive and too many of these clumps form, they can interfere with an organ’s structure and function. When left unchecked, chronic inflammation can lead to fibrosis, which is the permanent scarring of organ tissue. This disorder affects the lungs in approximately 90% of cases, but it can affect almost any organ in the body. Despite increasing advances in research, sarcoidosis remains difficult to diagnose with limited treatment options and no known cure. In everyday terms my white blood cells get over-reactive when I get a cold, or any other problem that needs my white blood cells to fight off, they go to fight but instead of fighting the clump together and form masses in the body, anywhere. I personally have it in every major organ of my body except my pancreas, well not that I know of.

What I know now and what I should have known then, is the reason I am an advocate for the Sarcoidosis Community. I would never want to see anyone else go through what I have been through.

But then I found out some different areas of concern for the Sarcoidosis Community. The two major concerns are the mental health of the community and clinical trials. The mental health I have been addressing with a National Virtual Support Group and Forums.

The clinical trials are a big issue for the Sarcoidosis Community. Diversity in clinical trials is especially important for the Sarcoidosis community because the highest ethnicity of people who get Sarcoidosis in the USA are African American women then the next highest rate is African American men, then Hispanics. But the percentage that is recruited for a Sarcoidosis clinical trials as African Americans is at 4%. That tells me they are not getting the true results for the population of Americans. Now do not get me wrong I do not just blame pharmaceuticals or researchers. I think it also belongs to the minorities as well to want to be a part. There is a disconnect and lack of trust that both the pharmaceuticals as well as the patients need to get over. There are also financial issues that the clinical trial researchers and pharmaceuticals need to work on as well so they can get more diversities involved as well.

The future for the Sarcoidosis community is so much better than when I was diagnosed ten years ago, but there is so much more to go. We do not have a cause which will really open up the research as well, but there are much more clinical trials then there were ten years ago.

The money for Sarcoidosis research has also been on an uptick and the awareness is growing but it has so much more to grow.

My goal is for everyone in the community and as well as pharmaceuticals to speak to each other and be able to utterly understand each other’s needs and wants to garner a common ground so that we can move forward and prosper as a whole community to finding a cure.

Here We Go Again!! What is One More Diagnosis?!?!

Here is some news you don’t hear everyday!! I found out very recently that I have diabetes.

The good thing about the diagnosis is that it explains a lot of symptoms I have been going through.

November 2020-January 2021 I was having a lot of dizzy spells, trouble eating, no appetite, going to the bathroom too much, dehydration and headaches as well as many other problems. Nobody could figure it out. They all mirrored my other diseases so it was so hard to diagnose.

I went to my Primary doctor on December 29, 2020. The doctor sent me to get a full blood workup. I went on December 31, 2020. Because of the holidays they didn’t get the results until January 4, 2021. They found something that was so out of the normal {if I have ever been normal}. My Blood Sugar was at 631.

That day I get a call from my doctor’s office calls me that I need to get right to the hospital. I was shocked. They said my blood sugar is dangerously high. It was at 631, the normal is 90-140.

I rush over to the hospital walk in normally and told them that my Primary Doctor rushed me to the hospital. They had me sit in the waiting room and then a nurse came up to me. “I am here to take your blood sugar.”

So I am thinking okay…. Then all of a sudden I was in a whirlwind of activity….

The nurse runs over and grabs a wheelchair, tells me to get in it.

She takes me to an emergency trauma room.

They help me on the table and as soon as I am on the table I look up and I see about ten emergency workers running in and working on me. I am truly at a loss at this time because I barely knew what was going on.

I see they are pumping me with fluids through an IV and of course have the EKG and oxygen on by then.

Finally three doctors come in and tell me that my blood sugar is now at 890. One doctor couldn’t understand how I was still lucid and answering questions.

The thing about it is that I didn’t really understand what was going on because I never habd blood sugar problems. The numbers I didn’t really know what they meant. Finally an endocrinologist came over and told me ” You see sir, your blood sugar shouldn’t be over 140. Most people with a blood sugar of 850 or higher are in a diabetic coma, and out of those people 75%-80% don’t wake up.

That is when I found out how serious it was. I cried! My mind was racing. Thinking about my family (who wasn’t allowed in the hospital), my friends and then my Sarcoidosis community. I was truly afraid. How many times can I beat death??

Why do I keep beating death?

There must be some plan for me, but what plan?

What did God want me to do or finish?

I also thought about how it is getting scary to keep doing this….

I wanted to put this in the book because no matter what only God knows the plan for you!!!

I am still here! I am still fighting!!

I feel I haven’t reached my destiny yet!

I want to thank everyone who has helped me in all my life ups and downs! Without each and everyone of you I wouldn’t be where I am!!

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!