Mental Health Awareness Is Not Just for a Month Long

May is Mental Health Awareness Month.

But for people like me Mental Health is not just one month. It is an everyday, every hour, every minute, Every second fight.

I fight anxiety and depression every second of my life. It is a battle I probably will never win, but also, I vow to never lose to it as well.  Every day I wonder how I am going to get through the day.

Am I suicidal? NO!

Do I suffer? YES!

This, as with all my blogs, this is not a pity party blog. It is to show people who don’t suffer from Mental Health issues what it is like to have to deal with this every day. Then to throw on the fact that I have health issues both rare and not rare to factor into my everyday life.

It is tough, but I have learned that losing is not an option. I won’t say that was something I learned overnight. I wish it was something I could have learned how to deal with this overnight. Sure, would have helped. Also, it would of saved me so much energy as well. But life is an ever-learning evolution of life.

So let me describe one day in my life. I woke up in pain just like every other day. You see my pain level is a 6-7 on a level from 1-10. Even with that some days are good, and others are not.  I always say I never know how my day is going to go until I wake up. That is not to say I don’t make plans. When I wake up, I don’t know if those plans will come to fruition until that morning, in some cases it is an hourly decision. As a chronic and rare disease patient it is tough, but I also must take a mental inventory as well.

At least with your physical health, you can take an inventory and pretty much know how much I can do each day. When it comes to my mental health, I have no idea what is going to happen from moment to moment.

Today, I just broke down. Why? I don’t know. What happened to kick this off? I don’t know. When is it going to happen? I don’t know. That is a lot of “I don’t know.” That much I do know.  

When I say I broke down I mean I started crying for what I would say is no reason, but there must be a reason. I just haven’t figured it out yet.

This unfortunately happens often. Me being a guy who needs to rationalize everything, I start to over-think. Well, that makes things worse. I get frustrated so what starts out as me tearing, turns out to be me crying uncontrollably. I have a great counselor and if I called her every time, I cried she wouldn’t have any other patients. I am a rational person, so I try to address it by myself. But I am learning that I will never know the reasons.

Mental Health takes a toll on every part of my life. It is exhausting, it messes with my physical health, but most of all it is debilitating. There are days where my diseases tell me “All you are going to do today is lay down and you are going to have to deal with it.” There are also days when my mental health tells me the same. It is a different feeling, but nonetheless it is there. Also with mental health it pops up out of nowhere, and for no reason.

So today I am fighting back the tears. I must have triggered something but don’t know what it was. I was and am laying down and crying. No this is not a cry for help! It is my reality. I am sure this is many other people’s lives as well. I usually start listening to music to calm down. Some days it helps other days not so much. Today, inconclusive so far.  Some days I just let myself cry. I think today may be one of those days.

I am sure you may be asking why I am writing this? Why put your dirty laundry out for everyone to see? Well, I do this because I want to tell others in the same position as me, that it is okay to feel this way. It is okay to not be strong all the time. It is okay to let your emotions take over at times. It is better to let emotions out so you can face them. Holding them in can and will be detrimental to your mental and physical health at some point.

I know this to be true from my past. I have learned from my past. Let me tell you about a day in September 2015. I was in a bad place. I was in so much pain. I was trying to sabotage my life because I felt I didn’t deserve anything good. I felt like I wasn’t getting the right care for my physical health. I was told that there wasn’t much else they, the doctors, could do to help with my quality of life. For days on end, I couldn’t get out of bed due to my physical and now that I think about it my mental health as well. But at that time my pain level was 9-10. I felt like I was a burden to my family, my friends, (the few I had), and to anyone else that knew me. Yes, part of it was feeling sorry for myself, but at that time I just wanted it to end. I wanted everything to end.  I wanted to just go to sleep and never wake up. I never thought I would ever be in that position. Here I am, what I thought a strong person. Showing and fighting for myself and others with my rare disease, but all the while just wanting to die. Yes, I can say that now. I just wanted to die. I was being selfish; I know that now. At the time you try to rationalize how dying would be better for everyone else and for you. Whether it is right or wrong, mostly wrong, you think about how everyone would be better off without you. So, I decided I was going to commit suicide. Yes, I actually planned it all out. I had the means, I had how I was going to do it as well. I had the plan, means and the most important thing the will, or so I thought.  There was one last move that I made that day. I called my counselor. Why did I do that?

Now, I say that I did it because as much as I told myself I wanted to die; I really didn’t want to. I just wanted the pain, both physically and mentally, to stop. I was tired. I was tired of being in pain, I was tired of being a failure, and most importantly I was tired of losing. How can I say that you might ask? Well, I call it “The Tears of a Clown.” There is this great song from the 60s called “Tears of a Clown.” By Smokey Robinson and the Miracles. On the outside I showed strength but just like my invisible rare disease on the inside I was crying. I still do that. It is easier to show happiness and tell people “I am okay” than tell them I was a mess on the inside. It came with less explanation.

So, what did I do that day? I did something that was even harder than committing suicide, I asked for help. I went to the hospital and put myself in a 72-hour watch. For those that don’t know what that is, it is going to the hospital and telling them I had thoughts and planned to commit suicide. To this day it was one of the hardest things I had to do. I had to break down my walls. I had to be vulnerable. I had to be honest with myself. While in the hospital, I thought about how I couldn’t even do that right. I failed at even killing myself. But I realized in time I didn’t fail. I succeeded! I succeeded at the hardest part. I succeeded at wanting to live.

So, the reason I wrote this is to let everyone know that having bad days, weeks, months, and years are part of living. It is what makes you strong not weak.

When I started writing this, I stopped in the middle of it. I was going to “finish it later.” But my later is today. I feel I needed to write this for myself just as much as anyone else reading this.

So, today may not be a good day, tomorrow may not be as well. I just have to tell myself one of these days will be better and I will be a better person for it.

When it gets to a point that you can’t handle it, it is also OKAY TO ASK FOR HELP! PLEASE ASK FOR HELP WHEN YOU CAN’T DEAL WITH THE EMOTIONS OR THE MENTAL ANGUISH! PLEASE REMEMBER YOU ARE NOT ALONE! THERE ARE SO MANY PLACES OR PEOPLE WHO ARE HERE TO HELP! YOU ARE STRONG WHEN YOU KNOW YOU CAN’T DO IT ALONE! YOU ARE STRONG WHEN YOU ASK FOR HELP!

Just another Mental Health moment in My Life!

I wanted to start this off with a couple of caveats. First I am having a rough physical time lately, but today I am going to talk about my mental health.

Mental health is different for each individual person. For me it was exasperated by my health problems in 2004. But I have had mental health problems for most of my life. I guess I was better at “coping” or as I say “hiding” it.

I am writing this not for pity at all. I am writing this to show you what can happen at any moment.

It is not uncommon for people who deal with mental health to have moments, days or even experience an extended period of tough times mentally. It is something I know and deal with constantly. If I am not dealing with it I am dealing with knowing that at any moment my anxiety and depression will hit me out of nowhere.

Today is one of those days. “Out of nowhere”, that is a weird concept. At one moment I can be happy and at another moment be crying. I do take medication but even with that things happen and my mood changes. You see one of the hardest parts about dealing with depression and anxiety is that you can try all you want to control them but in all honesty you can’t. I can only speak for myself but when I get this way I don’t have to have a trigger or a bad thing happen.

Let me just say I know I haven’t been out in the public saying what I have been doing lately. There is a reason about that. I have been doing things for different communities, but decided that I needed to go back to my basics. I am doing things that will help not only the Sarcoidosis community, rare disease community or the mental health community as well. I haven’t been so public because I want to do things not for the popularity but for the better of these communities. I feel I may have lost that aspect a bit. I went back to doing it for these communities and not feeling I needed to tell anyone what I am doing. The way I look at it is the actions and the reactions and results will speak for themselves. I don’t need to promote myself. I feel I lost that a bit. I personally know what I do is for the right reasons, but I felt I needed to put it out there to let others know. Now I am at a point of my life and my advocating life, that I am doing what I do for people who will see and find out what I have done in their time. I am not criticizing anyone on how and what they do for the communities they help. We all have our own ways to do things. I felt I was losing me. I feel like I am here for a reason. I have been defying health logic, both physically and mentally. I do believe there is a reason I didn’t pass on when so many, including me, thought I would. I remember one of the last conversations I had with one of my best friends, Rodney. He was in Intensive care and he called me and we were discussing life in general. He told me ” You are still here for a reason. You are here to finish your journey. You are not done.”

To this day I try to keep that in my head. I try to make sure I tell all of my story when I can. Everyone of us has a unique story. I always want to tell everything even if it is tough to discuss because I want people to know I may look on the outside as I am so strong, but I am human and I have good and bad days, I have days I am fighting with myself(I don’t say I am weak but I have moments of weaknesses).

Now back to today. Here I am in bed just “out of nowhere” I start crying. Why? I don’t know! What brought it on? I don’t know! I am here second guessing everything. I am second guessing my life, my death, have I truly helped people, and worse of all why am I still doing what I do both in advocating and in life. I feel like I disappoint people, I feel like I am disappointing myself as well. No specific reason just because. These days happen. Sometimes more often than not lately.

So I start thinking about my life. I have made many mistakes. I hope I am learning and helping others. Not to make up for my mistakes, but because I actually love helping people. Even though I know I love what I do, I still question if I am making a difference (once again not looking for pity). It is just part of my mental health fight. It is a daily struggle that I may never win. But I don’t feel like I lost either. I am still here.

I could of committed suicide in 2015. As most of you know I did set it up for it to happen. I was ready, so I thought. But I am still here for a reason, one I am still trying to figure out.

I was watching something today that made me think. It was a speech that Terry Crews said on AGT. “All it takes is one person to believe, for them to reach their dreams.”

I have been so lucky to have so many great people in my life. I truly believe without them I probably wouldn’t be here. As a child it was my Mom, my brothers and sister and my extended family to get me through my health fight of childhood leukemia. In my teen years it was my coaches Mr. Schneider and Mr. Burkley, who never gave up on me when I wanted to give up on myself. When I got misdiagnosed in 2004 with cancer, it was my daughter Savannah. When I got diagnosed with Sarcoidosis and fought through 8 surgeries in 4 years it is my wife, my daughters (Savannah and Isabella), and my new family of Sarcoidosis Warriors. First person I met online was Andrea Timmons, she talked me down so many times both online and on the phone even though she was suffering herself daily. Then it is people like Chasta, Trina, Cheryl, Cathleen, Kerry, Kelli Beyer, Duffy and so many more. MaryAnn and Rhonda from Bernie Mac have been an inspiration to me.

But there was and always will be two people in my life Rodney Reese and Paul Dickerson. We were and always will be “The Three Amigos.” Both Paul and Rodney have passed but they are always in my heart and always helping me still. They taught me what Brotherly love is. I still think about our calls and how we would end our calls with ” I LOVE YOU BROTHER!” I will always love you brothers!

I wrote this today because I want you all to know that it is okay not to be okay. Accept it, deal with it, make yourself okay with it. It doesn’t make you weak to accept it. It makes you strong. Also it is okay to ask for help! What makes you strong is self care both physically and mentally.

I am writing this to let you know YOU ARE NOT ALONE!!

I am here and I am at times not strong. I am strong to know this!

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…

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

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!”

My Story Then and Now

I am making videos about my journey with Sarcoidosis and Parkinson’s. I made these videos with the hope it may help at least one person to show them 3 things. I want you to know we all have our own battles and wars. Don’t ever think yours is too menial. We deal with what we are handed! 

1- Never Give Up! You are strong enough to fight! My motto is “I have Sarcoidosis, but it doesn’t have me!” 

2- One person can make a difference! You and your story means a lot. Don’t be afraid to tell your story!

3- You are Not Alone!

I made 5 Episodes (Videos):

Just click on the underline name of the Episodes to watch these videos. Good luck and I hope you understand my thoughts and feelings!! 

I do know they are long, but I wanted to put my feelings and my thoughts so you can see what I have been through and that you can still fight!! 

1- My Crusade to find a diagnosis.

My Crusade to Find a Diagnosis

2- My diagnosis and Surgeries.

My Diagnosis and Surgeries!

3- My Advocate Years.

My Advocate Years

4- 2018-What a Year.

My Story Then and Now- Episode 4- 2018 What a Year!!

5. Thank You All.

My Story Then and Now- Episode 5-Thank you

These videos tell some of my experiences with having a rare disease called, Sarcoidosis, and having Parkinson’s.  I know it has been a long battle, but honestly hope it will be so much longer! 

You see this battle has really taken me on a ride, but yet I am still here!! I am also still smiling!! 

These diseases have changed my life, but has not changed my will!

As I have always said ” I MAY HAVE SARCOIDOSIS AND PARKINSON’S, BUT IT DOESN’T HAVE ME!” I MAY PASS DUE TO THESE DISEASES, BUT I KNOW I WON!!! 

ME BEING ABLE TO WRITE THIS RIGHT NOW SHOWS THAT I HAVE WON!!!