Rare Disease Day 2023- Mental Health

Hello. Today is Rare Disease Day 2023!

My name is Frank Rivera and I have a Rare Disease called Sarcoidosis.

I started this like that because every Rare Disease Meeting it seems like we are in a support group meeting, we always say our name and what rare disease we have. I say this because we are over 30 million strong in United States in over 7000 rare diseases worldwide. There is only 5% of rare diseases that have a cure. That in itself is ridiculous.

We as a rare disease community have had so many challenges when it comes to diagnosis, treatments and of course cures.

I wanted to take today to talk more about Mental Health and Rare Diseases. Being a male and talking about mental health and its effect on rare diseases was unheard of not that long ago. 10 years ago, I didn’t hear about it at all. Luckily it has moved into the forefront lately.

I am going to bore you with statistics:

• Every day, approximately 132 Americans die by suicide.
• There is one suicide death in the US every 10.9 minutes.
• Suicide is the 3rd leading cause of death for 15- to 24-year-old Americans.
• The highest suicide rates (per 100,000) in the US are among white males (26.4), followed by American Indian/Alaska Native males (25), and Black males (14.1).
• There is one suicide death for every estimated 25 suicide attempts.
• There are approximately 1,204,575 annual attempts in the U.S. (using 25:1 ratio) or one attempt every 26.2 seconds.

We as the rare disease community fight with the physical health and unfortunately forget about our mental health care. I am going to hit on different aspects of Mental Health in this blog. I am going to speak about Men’s Mental Health, Patient Mental Health and Caregivers Mental Health.

Men’s Mental Health–

I have been speaking on this subject for a couple of years. We as men have been told for most if not all of our lives, have been told to “Be A Man!” “Real Men Don’t Cry!” “Buck Up and Be Strong!” and so much more. Well, you see that does NOT work! Look at those statistics up above. We as a community need to acknowledge that men need to be able to ask for help. It makes you Strong to ask and know you need help. We need to show support to our male patients and caregivers and let them know they are not alone. You see when I go to many rare disease conferences the amount of men that are at these conferences are small. Not because men don’t want to be there, it is because there are too many stigmas on roles as men and women. We need to knock down those stigmas and those “suppose” to follow. As time goes by I see more male advocates, which is great, but we need to have more breakout groups for men. I believe now that Covid is over more people are learning that men suffer just as much as women.

I also want to say to men, asking for help could be a therapist, a religious leader, a really good friend (one who will be able to support you and also get you moving both physical and mental), another patient or caregiver or a support group. There are support groups that are in person as well as male support groups online.

Statistics of Male Caregivers

• Of all caregivers in the United States, 16 million, or 40% are men. Of these men: 63% identified as primary caregivers. 50% are caregivers by choice, the other half felt obligated to take on the role.
• In recent decades, gender norms in American society have begun to shift away from stereotypical roles where women are characterized as innately nurturing and passive, while men are seen as independent, decisive, and natural problem-solvers.  Younger generations are challenging the traditional ideals of how our culture defines our roles and expectations based on our gender or sex. 
• The average age of male caregivers is 26.9, although the average age of adult children caring for an aging parent is 46.4. Men who care for a spouse are an average of 62.5 years old.
• 37% refrained from telling their employer about their caregiving responsibilities. For millennials, that rose to 45%.
• 49% of men felt they had no choice in taking on their role as caregivers. This number rose to 60% when caring for a partner or spouse.
• 52% of male caregivers anticipate caring for someone in the following five years.
• 56% of caregivers assisted with medical and nursing duties (75% for those caring for a spouse). 47% helped give medication or injections, but 72% reported having no prior training.
• 62% state their responsibilities to be stressful, 46% report physical strain, ad 44% experience financial stress.
• 62% found it necessary to assist with personal care and secondary tasks, and 54% found it difficult to help with more intimate responsibilities.
• 63% of male caregivers report being the primary caregiver. Of this percentage, 52% had additional help, but 78% received no outside support.
• 66% of men work 40 hours a week. 62% of this group had to make special work arrangements. 48% were late, left early, or took time off to handle caregiving duties. 15% had to take a leave of absence or work part-time.

Patient Mental Health-

Patients are a rare breed, yes pun intended. We go through so much just to survive. We go through things like pain, disease progression and other diagnoses as well. We fight each day just to live that day and more in the future. But my question is:

What do you do to help your mental health?

My specialist told me on my very first visit. “Fighting off any disease is 90% mental and 10% physical. I can give you any medication and if your brain gives up your body is going to give up too.” I took that to heart. From that day, I try to fight each day both mentally and physically. I have learned to ask for help. In time I learned to say no when I didn’t feel well.

I also have been steady going to the same therapist for the past 12 years plus. She has been a savior. You see in 2015, I was ready to attempt suicide. I had it all planned out. I was being told they didn’t know what to do for me anymore and the pain was so tough to bear. Plus I could barely get out of bed and felt I was being a burden to my wife and daughter. So, I truly was ready to leave this world. But I did one last thing that saved my life. I called my therapist! She brought up something to make me think. She said “You don’t want to die!” I was like “yes I do!” She was like “No you don’t!” I asked, “Why do you say that?” She replied “You would not of called me!” That rang true to me. So, we decided to talk further, and we decided that I should sign my self to a 72 hour watch. I could of easily have been one of those statistics from above. Yes, I have a personal stake in Mental Health, but I also see too many patients suffering and either not knowing they need help or more likely they can’t afford to get a therapist or there aren’t enough therapists for patients.

Caregivers Mental Health-

Now here is what I deemed “The Forgotten Ones.” Caregivers can be anyone who help a patient in any capacity. I have always been told that a Caregiver is the one taking care of the patient. Well to me there are different types of Caregivers. There are those who are there all the time, those who help whenever possible, or those who spend their available time no matter how long who also can be Caregivers. I am also going to say that Caregivers aren’t specifically family, partners, or friends. There are appointed health care workers and so many others.

You see I call the Caregivers the forgotten ones because they are the ones who work so hard to be there for the patients, that they forget about their physical and mental health. They are also the forgotten ones because they are never asked about their own health and/or their mental health care. People forget that being a Caregiver is one of the most stressful positions in life. For the most part many Caregivers are just expected to be there for the patient, especially for children with rare diseases. Some Caregivers are not warned and don’t get a road map on how to deal with the diagnosis, the patients, or how to be Caregivers. So stress plays an important everyday outlook for all types of Caregivers. Not only are they running around taking care of the patients, but they are also expected to take care of themselves.

Here are more statistics:

• Half of all family members who care for elderly people die before the patient, statistics show, or they become seriously ill due to self-neglect.
• The study was published in the Journal of the American Medical Association.
• In the May 2022 survey, 36% of caregivers said they suffer from depression/anxiety, a figure that is 114% higher than reported by non-caregivers.
• 40% to 70% of family caregivers have clinically significant symptoms of depression. About a quarter to half of these caregivers meet the diagnostic criteria for major depression. [Zarit, S. (2006). Assessment of Family Caregivers: A Research Perspective.]
• Roughly 4 in 10 (38%) family caregivers find their situation highly stressful (score 4 or 5), 25% report moderate stress (score of 3), and 36% report little to no stress (rating of 1 or 2 based on a 5-point scale). [National Alliance for Caregiving and AARP. (2015). Caregiving in the U.S.]
• Thirty-five per cent of parents with chronically ill children met criteria for clinical depression, compared with 19 per cent of parents with healthy children. More than half (57 per cent) of parents with chronically ill children met criteria for anxiety compared with 38 per cent of parents with healthy children. As per Sick Kids Research

These numbers are staggering. We need to support Caregivers just as much as we support Patients. We also need to make sure that both men and women get help.

So, as night falls on another Rare Disease Day, I just want to say that we need to keep pushing for better Mental Health. As my Specialist said, “You can’t fight your rare disease if you give up mentally.” That also pertains to Caregivers!

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

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

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.

Personal Life…

As I sit here today I am in tears…. Why you may ask?? 

My life has been full of ups and downs, and I do mean a lot of ups and downs! I know many people who have had less that have not made it to where I am and I know many others who have had more and have done so much more than I have.

Let me start off by saying this will be real hard on me, but I have to do this! I am going to start at the present for a moment then go back to the beginning.. Some of you know about my story, but even if you do, I am writing this because I am in a place where I need to put some of these feelings and memories in perspective for you all to understand me.  The true me!

Yesterday I took my daughter to The Today Show. It may not seem like such a big deal, even to my daughter it may not have been a big deal. There are many reasons I took my daughter out of school for this. First off it was International Day of the Girl! Second the strength my daughter has shown me and so many that actually know her, she has the strength of many so she needed to be here today! I knew, even if she doesn’t understand the significance of me taking her there, that I wanted to make a memory that she won’t forget, about us. I know that my Mother use to take me to places that I have always remembered even now. I want my daughter to remember those special times! Yesterday was so amazing, to see such strong women of all ages, especially during these times when men of all backgrounds are treating women as second class citizens. I want my daughter to know I support her in every decision she makes. I know she won’t always make decisions I may like but I will support her NO MATTER WHAT! Seeing Meghan Trainor, Jennifer Hudson, Kelly Clarkson and most importantly Michelle Obama. I have the utmost respect for Michelle Obama. I will never forget when she said ” When they go low, We GO HIGH!” After all her and her family has been through she still has the class to be so AMAZING! When we were at the Today Show yesterday Savannah said to me one thing that made me realize what this meant to her and it was something so simple. ” Oh My God Michelle Obama is going to be here! Wow I love her!” With that I knew I must of done something right!!!!

So many people say things if you are terminally ill why are you going out?? Why because I am not dead!! I have a family that needs me both emotionally as well as physically as much as I need them. I have some great friends and people in my life but sorry nobody will ever mean more to me than my family. I have made many mistakes in my life but my family is my source, they are why I am still here.

Okay so now that I have said that I am going to go back to the beginning. I have been through so much as a child some you know some you don’t. Let’s start with at the age of 5 I was diagnosed with leukemia. I don’t remember that much from the ages of 5 until the age of 8. What I do remember is that I was very sick and had no energy and seeing doctors all the time. I feel I blanked it out because of how hard and terrible it was at that time. I was not allowed to go to school from half of kindergarten all the way until March of fourth grade. I remember my brothers and my Mom helping me learn to read as well as doing math and just learning in general. Then at some point I started to read Encyclopedias, to be more specific the 1972 edition of The World Book Encyclopedias. I do remember that by the time I was ready to go back to school I finished from A-Z. I do know from my Mother that there were many times I could of died from being so sick. It is something in my history I still haven’t been able to get all the details and still not sure if I want to know the details.

During my life my Mother was always sick herself. She had a bad heart for so many years of her life. Due to that she was not allowed to work. We really had to always make due with what we had and that we did. I won’t say that we didn’t complain, but in the end I know my Mother was so amazing! She gave me the strength to be the person I am today. She went through as many as 8 or more heart surgeries that I can remember. I remember hearing a story from my Grandmother that when my Mom was in the hospital one time in 1975, the doctors told my grandmother in front of my Mom, thinking that she couldn’t hear because she was in a coma, that she won’t make it through the night. Well I can truly say this is where I get my Mom’s fight. She woke up the next morning. She woke up and told that same doctor to F off. Those were actually her first words when she woke up. Now you can understand why I am who I am. You will understand more as I go on with this.

As a child I was in two foster homes, because of my Mother’s heart problems. The first foster home was in one word, HELL! They were just a Foster Family for the money and at any given time they had 4 or more Foster children plus their own 2 children. I remember that they were the type of family that if you didn’t eat all of your food you had it for breakfast, one reason I don’t like Macaroni and Cheese to this day. I actually go back to those days, I guess it is a PTSD episode. I also remember the family also punished me for 30 days for something I didn’t do. That wouldn’t be a big thing but my punishment was 30 days in the bedroom, only time I was allowed to leave was to go to the bathroom. I ate and slept, that was all I was allowed to do. It scarred me for life. Very vivid memories. To make it through that was just the thought I had to be strong for my younger sister since it was only her and I together while my two older brothers were in a different home. It was a lot for a a very young boy who couldn’t even go to school because I was too sick. Right there I knew one thing! I AM STRONGER THAN I EVER KNEW! I am not trying to “Toot” my own horn, but this is and was true life, My True life!

I have always been a fighter, even when I didn’t know it.So much in my life has tested me and my strength, but also made me strong for my biggest test. THE TEST OF LIFE OR DEATH!

Because of my Mom not being able to work,  we weren’t able to stay in one house for too long. We rented for most of my life. We moved around often and my mother was on disability so we were on Food Stamps. Yes we were on food stamps, for most of my childhood life. So when people talk about food stamps and Medicaid I take very high offense to it. My Mother didn’t want to be on it. I could see the pain in her face when I was young about being on it. She had NO choice! Not everyone uses Medicaid to beat the system! Now that I am on disability and on Social Security due to my many health issues, I don’t want to be on it either, I have no choice too. It really shows me how hard my Mother had it. I don’t know how anyone could live off of this! My Mother did it with 4 children. To this day I look back on My Mother in awe. I know I hold My Mother on a high Pedestal, I know she wasn’t perfect, hell she told me more than once that she wasn’t, but I am also not naive to think she didn’t give up so much for all of us.

On October 2, 2001 I lost My Mother! I moved down to Florida in January 2001. I moved in with my Mom because she asked me for help. I remember seeing her so sick that past year. It was so tough to see this strong woman fighting but getting weaker and weaker each day. It was a monumental moment for me when she passed away. My main support system was gone. It took me some time to really get over it! I can say to this day I never totally got over it.

On December 28, 2002 my daughter, Savannah Rose Rivera, was born. What an amazing day that was!! I remember getting to see her for the first time. Carrying her to the nursery. She was so beautiful! It was so amazing! She was the best thing that happened to me at a time I needed it the most! She is the second coming of My Mother. So many similarities to my Mom. Unfortunately my daughter has been through so much herself. She is another one who is so resilient and keeps moving forward. After moving back to NY I wasn’t able to speak to my daughter for close to 4 years. When I finally received full custody of her in 2015, it made me close to being complete.

As many of you know I was misdiagnosed with Cancer in 2004, As I went through Chemotherapy and Radiation treatments I thought that would be the lowest part of my life. Boy I guess watch what you ask for.

In 2009 when I moved back to NY I finally felt comfortable. Honestly only took 42 years. I knew I didn’t have my daughter at the time, but I felt things were moving in the right direction.

In 2010 we found out that my wife Diana was pregnant. We thought wow what a great present! My daughter Isabella Joy Rivera, was born on January 2, 2011. Way earlier then she was supposed to be born. She was only 25 weeks old. We knew it was a long shot that she would make it. She lived for 5 amazing days! She fought tooth and nail to try to live but in the end her lungs were underdeveloped and on January 8, 2011 she passed away. I have never had that feeling I had when that happened ever before, even with my Mom passing. You are never ready to see your own child pass away. I don’t care if it was 5 days or 100 years, you should never have to live through seeing your own child pass away.  I remember that night she passed like it was yesterday. It was so tough for me, but even more so for my wife Diana. Just remembering the sleepless nights and feeling so helpless to help my wife was so tough. There was one thing that will always resonate in my head, someone close to me saying they didn’t acknowledge my daughter Isabella, because she didn’t live long enough to be known. To this day I will always remember that!!

Unfortunately as usual we didn’t have enough time to mourn our daughter, Isabella. At the end of January of 2011, I went to the emergency for my IBS and while doing a CT Scan they found masses in my bottom lobes of my lung because when doing the CT Scan of my abdomen they caught the two bottom lobes of my lung.

That started the journey of Sarcoidosis.

What a journey it has been! 8 surgeries in 6 years, removal of my gallbladder, and so much pain and missed opportunities that has been testing my will to live more than once. Can you imagine finding out you never had cancer, that you went on 4 years of radiation and chemotherapy for nothing??? Well welcome to my life.

So when I got diagnosed with Sarcoidosis I already had it in 75% of my body, now I am safe to say I have it everywhere in my body except for my liver and kidneys. What a blow to my body. Trying every drug known to doctors and then some to find out none of it is working. Then 3 years ago my doctor decided to try me for a clinical trial. I wasn’t accepted in because my Sarcoidosis was too far advanced. Then we tried to file with the FDA to try an experimental drug. I was feeling good about it. There were known cases in Europe and Asia that were reacting well towards a medicine. I was denied Compassionate Use 2 times because I had 2 different illnesses at the time. In August 2017 I was diagnosed with Parkinson’s. It was another misdiagnosis, they said I had essential tremors back in 2012 due to the Sarcoidosis. Well they thought they caught that early enough because the medicine was helping with the shakes. Little did we know that the Parkinson’s and the Sarcoidosis were double teaming my brain and fighting each other for space in the brain. In April 2018, I was told by my doctors that I was terminally ill, that my brain wasn’t reacting to any of the medicines. They told me that they didn’t know how long I had, but if I didn’t slow myself down I would be in real trouble.

Even though I have been on disability since 2013, I was advocating first for Sarcoidosis Awareness to government officials trying to get recognition for a disease that was getting NO support from the government. I would go to local government meetings and made good contacts in the Town Legislature so they made April Sarcoidosis Awareness Month. I worked with some of the County Legislatures and received a Proclamation stating that April to be Sarcoidosis Awareness in Suffolk County. Then I received one for New York State. I was also working with the Federal Government both Senators and US Representatives to make April Sarcoidosis Awareness Month Nationally but due to the climate in Washington DC I couldn’t receive a bipartisan bill introduced. Meanwhile in those years I participated in one Congressional briefing in Washington DC in 2015 then organized another in 2017 with Foundation for Sarcoidosis Research. I also went on to help the rare disease community in 2014. I joined EveryLife Foundation working groups and even asked to be chairperson of one of the working groups, in 2017, to help get laws passed, as well as Global Genes Foundation Alliance Member in 2015, and a NORD New York Liaison in 2017. In 2016 I even set up “A Day for Rare Diseases!” It was a day for all rare diseases to discuss there diseases and the community and government officials as well as doctors all could talk and learn about Rare Diseases.

So in April 2018, I received the news I was downgraded from chronically ill to terminally ill. I was very distraught. I called some people who I considered friends in the Rare Disease Community and was working with me on a Mental Health project that day and the response I got was “Well what does this do to the project?” Not are you okay? Not do you need anything? So I was extremely upset so I dumped the whole project. I did not feel comfortable handing over the project that I, and only I, worked my butt off to people who didn’t care about me. How could I be assured they were going to carry out my vision? I know I did it in haste and I am sorry to all that it would of helped. But I am not going to have my name on something that I worked so hard on, to have it done wrong! So when that happened I started to get calls from NORD, and EveryLife and others telling me to step down from all of my positions without even being asked my side of what happened. Then I got ostracized by most of the rest of the Rare Disease Community. I felt really used and upset. I helped out whenever they asked me! I bent over backwards for them and to get slapped in the face really hurt!!!

So here it is October 2018. I have been having so many health problems since April including, Brain and memory issues, fainting, dizziness and worse of all migraines that have been non stop for over 6 months now. No medicines are helping me! Nothing!! I just sit here and smile while my brain is disintegrating. As I said before my brain is being attacked by both the Sarcoidosis and the Parkinson’s and I am losing! They don’t know what medicines to give me anymore!

So what do I do? Honestly?? I go out to do family things and make lasting memories for my family to remember and I get criticized, I stay home I get criticized, It doesn’t matter what I do it will always be wrong to someone! I am tired of hearing it! I am tired of being questioned if I am terminally ill. I am tired of people saying well you look great! I am even more tired of everyone telling me what I should or shouldn’t do! People think when you say terminal you should be in hospice or in a bed dying! Well let me tell you something! I will not be going out that way! I will be me! I will be making memories with my friends and family! These memories aren’t for me! I won’t remember them when I am gone! I am trying to make sure that my family and friends have some good things to remember me by.

Okay my last piece is how I would like to be remembered! I am not asking much!

I just hope I was able to make a difference in one person’s life! I want my wife to say I was a good husband! I want my daughter to say I was a good dad!  I want nothing more to be remembered as a person who made mistakes in life and had hard times but persevered through it all and tried to be the best person I could be!

I also want everyone to know I tried so hard to help those who weren’t able to help themselves!! 

Honestly I don’t know how and when I am going to die. I am a realist and know it could be sooner than I ever wanted it to be! I do know that I am going to live as much as I can while I can! 

Don’t judge me unless you have been me!!!

 

 

 

My Advocate Story Now and Why Me?

So here I am today in my thoughts thinking about why me?

I know I have had three main diseases, Sarcoidosis, Sjogren’s Syndrome and Parkinson’s. I know I have been through so much in my life from childhood leukemia to being in two different foster homes as well as having my daughter Savannah to losing my daughter Isabella to marrying my both my love and my best friend, Diana.

I have been through so much this year that I never saw coming going into the year. I started the year very optimistic. But as life goes you face ups and downs. Well this year has gone downhill since April.

April was a crazy month. I was told by my doctors that I have been downgraded from chronically ill to terminally ill. When I was told it took a bit for me to deal with it but my first reaction still rings true. I told the doctors “Thanks but that is just a word to me!” I knew I had to cut back in all of my activities and my endeavors.

Due to that I upset many people, but I also know a lot of people who upset me. I thought I had some friends, but ultimately realized that I was being used. I haven’t said anything about this, but it really hurt when the people who I thought were close to me didn’t care when I said I was diagnosed terminal, their first comments were “What does that mean to the project?”  Not are you okay! So I realized where I stood. I do know I personally didn’t handle it well either. But how do you handle being told you are terminal ? There is no blueprint for that. I should of let them run the project. But after the exchange I didn’t feel they had my goals at hand. What I did realize is that I needed to stop feeling that I was being used. I worked so hard for the rare disease community. The feeling of being cast aside from all of what I had did for 7 years putting my own health at risk to help the rare disease community made me at first angry then sad. When asked by different organizations to join as an alliance member, or talk at a conference, or director of  a working group, or a liaison for another I helped out. Then to be ostracized by the community without a care makes me angry and sad all at once even now!

I have stayed on as a National Sarcoidosis Ambassador as well as RUGD Ambassador for Illumina, plus I have taken some small roles that I can do for other organizations at home, Savvy_Coop, Breakthrough Crew, and WEGO Health.

I won’t lie I know I am not always easy to get along with! When it comes to advocating I have an unusual way of doing things, always have and probably always will. I can say for the most part it has worked for me to raise awareness. My US Representative and Senators know me by name. They have helped me and done things for me that most haven’t done for others. My approach has always been, be straightforward with them and I expect the same from them. I will help them as long as they are straight with me. I have always tried to put the patients first. Not just myself but the whole community.

I still have a huge problem with how adults with rare diseases are treated in the community itself as well by . I will never stop expressing this fact. Please don’t forget that there are 30 million people who have rare diseases, of those 30 million 50% or 15 million are children, but the forgotten ones the other 50% or 15 million are adults who don’t want to die, who have a family that they are suppose to take care of, who have lost their jobs because of these diseases. 

I have many things I should be proud of. I know that. I have been nominated for advocacy awards as well winning Advocate of the Year by my Town. But one that is not why I have done this and two it is about the patients not me. Plus the Sarcoidosis community, has never wavered or questioned my intentions. I am so happy that the true community in which I started with has stood behind me and I know they have my back as much as I have theirs.

I am far from capable to do the things I was able to do just months ago and because being terminal I know I will be able to do less as time goes on. Those are just the facts. Does it stop me from being an advocate.. NO! Does it limit me… yes.. but you can still be an advocate from home. I can’t travel as much as I once did. As a matter of fact I can’t do a quarter of what I did before, but I know a quarter of me giving is still better than none of me. I am forever grateful for FSR and others for accepting me for who I am and not who I was. I will never be who I was! But I can be the best who I am now.

As to the “Why Me?”

I am not one to feel sorry for myself! Not in my Genes! I do have times when I think why did this happen to me? Why is The Sarcoidosis and the Parkinson’s having what my doctor told me as a “turf war in my brain, and I am the loser either way!” Why is my memory so bad now? Why are the migraines been going on for six months now with no stopping in sight?

Many people say I have a right to ask “Why Me?” Don’t get me wrong I do at times. I am one that deals with facts. I have three diseases that are killing me. That is something I can’t change. It is “The New Me!” Do I wish I could feel better of course, but there is nothing that is going to change that for now. I have to live in the now!

Right now I have to be the best person I can be, be the best family man, husband and father I can be, then lastly be the best advocate I can be now. Yes in that order! 

If I don’t take care of myself first then the rest doesn’t matter. Some people call it selfishness. I call it self awareness! It is something that I am not very good at or as I have been told before “I stink at!” I am trying to figure it out more now than ever.

I have learned that just because I have put myself first it doesn’t make me selfish. It makes me selfless. Why you may ask? Because I am not helping anyone if I don’t help myself.

I have been writing this blog not only for you and to show you what I have done, but most importantly for me to remember what I am here on this planet for. For a long, long time I have felt like I didn’t matter, like I am just here! Well I am here for a reason and the reason is to help others and by helping myself I can do that. I have changed my focus on life because life has told me to, but that doesn’t mean I care less or am not involved in advocating. It means I am doing the best I can, when I can, for as long as I can!!

I sincerely want to thank those who have been by my side with this and I don’t know where I would be without them!

Diana, my wife, my love, my best friend. I don’t know where I would be without you. You have been my rock, my life, my soul! I live for you! No matter what we have been able to handle things together! What a team we make!  I love you more than any words can say!! Your sacrifice to be with me is incredible. Your devotion for the things I do as an advocate is unmeasured. You are the best wife and person anyone could ever have!

Savannah, my daughter, my everything! You have been so amazing! You have inspired me to be a better father! You are the best! I live for you! You are and will become the best woman, more than I could ever imagined!

Debby, my counselor, but more important my friend! I have been able to go to you with anything no matter what, without fear of being belittled or feeling unimportant! I love you! What you have done for my family I could never repay you.

Isabella, my daughter, even though you were on this earth for 5 days you are always in my heart. You have taught me things I never would of known about myself. Thank you so much for being in my life forever!

Mom, you taught me so much! You are the strength in which I lean on. Even though you have been gone for 17 years you are only a question away. I feel you in everything I do. You have given me the strength to fight for who I am, what I am and for where I am right now. I always hope I am making you proud now and always! You have shown me what it is like to be a fighter! I love you now and forever!!

My Brothers and Sisters, you guys have helped me to be who I am today. Though I may have strayed away from you at times you are always in my heart! I love you all!

My Family, I want to thank you all for all of your patience even though I didn’t deserve it at times. I love you all!

My Mother in Law and family, you took me in and have taken care of me throughout my sickness. You have been there for my events and supported me throughout! I will always be grateful and love you all!

Kelli, my FSR helper but more importantly my friend. You have always been there for me when I needed to talk and just to bounce ideas off of. You are so amazing! I love you!

Cathleen, you may be my Vice President, but you are truly so much more. You are my friend, my confidant, my right hand person! Thank you so much for all of your help and support! I love you!

Kerry, you are amazing in everything you do! You are a very special to me and my family. I am so glad and honored to say you are my friend and co-Ambassador. I love you and Mike and your Mom, Iris!!

FSR Ambassadors, there are too many of you to mention. You are all so amazing! You are such an inspiration to so many and to me! Without all of you I know I wouldn’t be where I am now. My original FSR Ambassadors we made history! You are all family to me! Much Love To All of You!

Ginger, I remember when we both just started fighting the crazy battle against Sarcoidosis. I remember our first conversation. We just talked and you actually asked my opinion on how we can make the organization better. I love that we are always able to talk and that you have had my back! Love you!

Alesia, I love you! Your attitude towards life is nothing short of amazing! You are an inspiration! So glad to say you are my friend!

To Everyone else who has been there for me, Thank you so Much!

 

 

 

 

 

 

Why??

Today I have been thinking about the word WHY???

• Why don’t I have close friends?
• Why do I have a rare disease and two other diseases?
• Why do I keep seeing on Television about children having a rare disease but nothing about Adults still? Not trying to say anything against children but adults have rare diseases too.]
• Why can’t anyone figure something to just help me feel a little better?
• Why am I terminally ill? What happened? 

I will try to keep things in order, but sometimes that is not that easy for me.

I know I shouldn’t be complaining, but I will at times and today may just be one of those days! Many people have it worse than I do, I realize that. My life has been rough , but as hard as it has been I have been blessed. My Mother even though she was sick most if not all of my life, was AMAZING! I know she may had done things that weren’t “according to everyone’s right way” but she did the best she could and loved us unconditionally. I know for me there were no limits in subjects that I could talk with her about. I also have a family Diana my wife and Savannah that have been by my side for a long time and many patients don’t have that. Also I feel like my extended family is trying to understand, it is very hard to understand when you don’t see or deal with it regularly.

Why don’t I have close friends?

Now when it comes to friends that is a totally different story. I lost a lot of friends, but a lot of that was my own doing, I own up to that, but other friends I lost have been due to being sick. Most of the friends I have now are because of my sicknesses. My wife of course is my best friend! But if asked if I have another best friend I can honestly say right now I don’t think I could name a person. I am not saying it to be ” Oh Poor Poor Me!” I am just stating facts. I have some people I can trust and can talk to, but there isn’t that one person I could call and say ” Hey you want to go out for coffee?” Like I said some of it is my fault, but when you need that one person the most it stinks and hurts. I would love to go to the beach just for a little while but since I don’t drive that makes it tough. It is the little things in life! But it is very hard when you are terminally ill and can’t go out to make friends. Enough of the Pity Party! I love the friends I do have don’t ever get me wrong! This is a very common occurrence for chronically ill patients to lose friends, but nevertheless it is tough! I am not perfect! Never was and Never will be! I have done stuff I regret and probably will do again, I am human!

Why do I have a rare disease and two other diseases?

Now this question of course is rhetoric. I will never know why I have Sarcoidosis, I can speculate, but I will probably never know. Same as Sjogren’s Syndrome and Parkinson’s. So why ask this question? It could be why me? But not really! It could be God doesn’t give you more than you can’t handle, I am human I wonder about that. Was it something I did in my past? I never believe that for anyone or so many Great people wouldn’t of died so early.

So the reason I ask this is really what have I learned since having these diseases? There are many things. Some good some not so good.

I have learned who are the real people in my life! I have learned how strong I truly am! I learned I may not win this fight , but I sure am not going to lose either! When all is said and done people can say whatever they want good or bad, but I did things the best I could. Sure I would change many things but they made me who I am right now! Someone so passionate about not only about myself but most importantly others.

I have these diseases because it made me a better person! Sounds weird, doesn’t it? I am sure there are some who may not think that but I can’t please everyone, nor will I try! I wish many things are different, but I am here fighting for my life and many others the best I can. It is different than before, but now since I am even more of a homebody than before, I can only do so much but I still try. I won’t stop fighting for what I feel is right, no matter who it upsets if I feel it is the right thing to do for the patient. I can’t change that! Never mind can’t, I won’t!!! These diseases have made me a better person in other ways also. I don’t sweat the small stuff anymore! Why spend the rest of your life worrying about small things? Stressing yourself over why you can’t go here because you can’t afford it or someone does something small that bothers you is such a waste of time!

So I guess the reason I have these diseases is that it gave me a better concept of who I am!

Why do I keep seeing on Television about children having a rare disease but nothing about Adults still? Not trying to say anything against children but adults have rare diseases too.]

I know this is a very touchy subject. Let me start this off like I have before. There are at least 30 million Americans who have rare diseases. 50% of them are children. It is a sad truth that too many children have rare diseases, but don’t forget that 50% of rare disease patients are adults also. So stay with me on this one for awhile!

I have never tried to separate children and adults, but how many times do you hear about Adults with rare diseases compared to the children. I know it hits the heartstrings when people hear or see a child with a rare disease.

Do you realize how it feels to be an adult with a rare disease? What an impact it also has on family life financially, emotionally and mentally? I can only speak from my experiences. This part is not to sound like a victim, these are real experiences that I have been through.

I have been sick for a lot of my life, it started with simple things as extended ear problems, then it went to something more serious like childhood leukemia. When I had that I missed half of Kindergarten all the way to 4th grade of school. I could of and many times was told that they thought I wouldn’t make it through that. Boy were they wrong!! HAHA!! Why I put this in is because I know what it feels like to be a child with a severe illness. It was terrible! Blood transfusions, Chemotherapy, being in the hospital, or in a bed at home for almost 24 hours a day was like. The worse is that as a child you don’t understand what and why this is going on! I remember my Mom being sick herself trying to take care of me and all of the hardness and strength it took out of her and all of my Mom’s friends who were there to take care of me too.

As an adult who is sick guess what? You still don’t understand what and why this is going on, but on a totally different level. You know that you are sick but when you have a rare disease the odds are you don’t know how or why you got the disease. Then you also don’t have the understanding of what this disease is going to do to your body, especially when it comes to Sarcoidosis. Every patient has different symptoms. Then add on Sjogren’s Syndrome and Parkinson’s, IBS, Diverticulosis, Uevitis, Rheumatoid Arthritisand etc… it all becomes a complete mess!!!

When I was first misdiagnosed in 2004, I had a good job, good pay, steady employment wasn’t always worried about money. I had my daughter to take care of but that was fine. When I was misdiagnosed with cancer my whole life changed financially, physically emotionally and of course mentally. I was having a terrible time trying to maintain my job while receiving Chemotherapy and Radiation.

My health was a joke.. Not being able to hold down food, strength was next to nothing for days, then there was the little thing called loss of weight, I went down to 98 lbs. I honestly thought my life was over! Once again they and I were wrong! It was what I thought was the worse thing that would ever happen to me, boy was I wrong ( that happens to me a lot).

When I was finally diagnosed with Sarcoidosis I wasn’t too worried, after all Diana, my wife’s brother had it and he was fine after taking some prednisone, I can handle it. Well I was in for a rude awakening. I was diagnosed in April 2011. The best and when I say best I mean worst part of this was going to Mt. Sinai to find out that I received Chemotherapy and Radiation from 2004 to early 2008 for not the right reason. I was misdiagnosed with lung cancer the whole time so my travels with Sarcoidosis was going to be totally different than most people and just another jab to add in there was because I was misdiagnosed and my body was so weak I also found out I had Sarcoidosis in over 70% of my body by then. Now it is everywhere except my kidneys and liver. I can honestly say having Sarcoidosis is so much worse now than when I was misdiagnosed and on Chemotherapy and Radiation. That sounds crazy doesn’t it? How can that be? Very easy! When I was on Chemotherapy and Radiation it was helping a little by shrinking some of my masses.

Now we come to what is going on now! You see I guess I have been a medical anomaly for my whole life. I found out last April 2017, that I have Parkinson’s. Oh great! Just one more thing to for me worry about . Well comes to find out once again in 2011 I was diagnosed with Essential tremors. Wrong! It was Parkinson’s! Surprise! So I started using the Carbidopa-Levodopa and I thought “Hey this stuff is great!” It has helped so much with my shaking! I am on my way to do so much! Then slammed down again, I start to pass out… This is new… What is this all about??? Starting August 2017, I start to pass out for no reason at all. In total I have either passed out or fell for no reason at least 7 times in almost a year. Then more and more symptoms came about! I started having memory loss. At first I think “Okay I am 51 so you are going to forget things.” So I thought. I starting forgetting words, dates, times, full conversations and just some fundamental things. So my doctor is like okay let’s check your brain functions. It is called an EVOKE test. Well it came back as one of the worse on a whole if not the worse he has ever seen. I am like what does that mean?

When I received my results from this test and other neurological tests we found out that my long term memory is at 24% and my short term memory is at 17%. What a shock!! I knew my memory was bad but I didn’t realize how bad it is.

I was also told my cardiovascular and my motor function has declined terribly.

Then the BOMB came in! I was told by my doctor you have been downgraded from chronically ill to the dreaded words TERMINALLY ILL!

Since I have multiple illnesses that are attacking my brain, mainly the Sarcoidosis and the Parkinson’s, it is extremely difficult to decide which disease is causing what anymore. I had tried every Sarcoidosis medicine that is known to help, but not one has worked for me unfortunately.

There is a reason I went into detail about my health! I want you to understand what me as an adult has been going through. You hear on TV that this child has to go through this or that or that this person with Cancer has to go through this. But you hardly ever hear about an adult rare patient and what they have to go through daily.

I can barely walk, I can’t lift anything over 10 pounds, Most of my days are spent in bed, mostly sleeping. Something as easy as showering is a chore. So is getting dressed, wash up, and any other daily activity. Never mind me emotionally or mentally.

That is what I have to deal with can you imagine what my wife Diana, and my daughter Savannah have to deal with.

• First off as a family we lost monetarily because instead of me being able to work I have to collect Social Security which is a joke. So we had to make some major financial cuts.
• Then there is the physical aspect that my wife and daughter have to pick up in slack but also imagine being a wife or daughter and seeing you deteriorate in front of their eyes. My daughter was use to seeing this strong Dad picking her up as a child to run and play to someone who can’t go out hardly anywhere with her. Can you imagine not only the physical aspect but the mental and emotional scars it puts on my daughter. She has to wonder if I am going to be able to dance with her at her sweet sixteen this year, nevermind graduation or marriage. Can you also imagine that a 15 year old contacts me during school just to make sure I am okay? When she wakes up or comes home she makes sure I have eaten, or do I need anything. That is not how a 15 year old is suppose to live! The emotional and the mental aspect for a 15 year old to know her Father is terminally ill. Nobody talks about that do they???
• Can you imagine what it is like for my wife who married me knowing I was sick, but I am sure she didn’t expect all of this. She has to be the bread winner, the stable and strong one no matter how she is feeling for my daughter but also for me. It is hard for her to ask everyday and 99% of the time I am saying I am not feeling well. She has to also be the one who drives around because I can’t. So when she gets home she doesn’t hardly ever get a chance to relax. Then if I can’t get out of bed she has to do take care of me. She has to do so much not just for me but also for my daughter. She has to take her around, buy her things because I don’t make enough money to do it for her and I can’t physically go out to do me, it kills me inside that I can’t be the “Dad” she deserves. To see what my wife has to go through physically and emotionally and also mentally is so tough. She tries to be the strong one but I know that she is hurting so much inside.
• We have changed our whole lifestyle, due to this. We have changed when and how we go out. We have to try to take time for us, but when I go out it takes days for me to recover. So both my Wife and my daughter try to protect me and I try to be strong for them. So it is very tough to find a middle ground for all of us because there is no blue print for this.
• Does anybody realize how hard it was for me as an adult who was a very physical and athletic person to go from a long distance runner to be someone who sleeps most of the day away? Can you imagine how hard it is for me emotionally as well as mentally for me to hear the words “You are terminally ill!” I still don’t know how to handle it.
• This is why I believe there needs to be more of a discussion about adults who have rare diseases or any adult that has a chronic illness.

Why am I terminally ill? What happened? 

Ok once again this is a rhetoric question! But one I ask myself so many days if not everyday!  I know that I have reasons for being sick and that is to help people, but why terminally?

The best I can say is that there were flaws in my diagnosis and we all know that.  Also I truly believe I should of pushed more to find answers. Having not one but two misdiagnosis is crazy!

I feel I let myself down, but I also feel the medical field and the government failed me! I don’t want too push blame , but I do want to point out the obvious. I tried to get into five clinical trials, but not one accepted me. I also tried for compassionate use but the FDA wasn’t so compassionate to me!

I let myself down by not being more informed in the beginning and not being pushy enough to find answers!

In conclusion I highly recommend that you have to be your own best advocate! I wrote this blog because many people don’t understand my experiences with being a Rare, Chronic and now terminally ill. I truly hope I can help at least one person to understand how hard it is and also to let them know you will probably never have all of the answers. Don’t stress yourself trying to find the answers of WHY!! Just understand that things are what they are and try to make the best you can of whatever your situation is!

When I first starting writing this three days ago I was thinking this was going to be a complaining blog. As I kept going I now feel it is something we all go through. It is how you handle it that will decide your future!

I also know I don’t have all of the answers! I just write to honestly make people think and more importantly make me think!!!

I Feel Useless!!

I write these blogs to give you an insight into just one person who is a terminally ill patient. All of what I write is about me and not trying to speak for anyone else!

I am having many days in which I feel absolutely Useless!!! My body feels like it wants to give up on me but my brain is saying no not going to happen… I am wondering will I ever have a day in which I can do anything anymore. Yes I do things, but I am doing these things in spite of my body! If it was up to my body I feel it would say done… I don’t want to say I am giving up but what your mind and what your body says are two totally different things.

I am always tired, hurting and emotionally drained. More than usual now. I know I was downgraded from chronically ill to terminally ill, but I am not the type to give up and refuse to. I don’t want to be laying in bed everyday and doing absolutely nothing. I can’t! If I do I might as well just give up! Well I have given up before and don’t ever want to go back there.

I have been thinking about so many different things because what else do I have to do. I try to read I just give up. I listen to audio books and lose interest in minutes. I know I am just going on but I want people to understand what it is like to be me now!

I am having so many internal battles that I don’t know who or what I am anymore. My head is like you are better than you think but my body tells me you are terminal. How do I decipher what is what?

With all this being said I regret coming out that I am terminally ill. Honestly I wasn’t going to tell anyone, but didn’t know the NBC Nightly News put it up on TV for my whole interview. So there it was!! I feel that too many people are walking on eggshells with me. When I say I can or want to help it is because I want to help! If I don’t do what I do best I might as well GIVE UP!

I know people mean well and are trying to make sure I don’t do too much. But I don’t want pity. I know as a friend where do you draw the line? For me I know my body better than anyone else. If I can’t do things I will let you know. I really need a purpose in life other than just staying alive!  I have a great family and support system who I want to spend a lot of time with and they deserve that. But most of the time I am home by myself just doing absolutely nothing because I am stuck in bed and in too much pain to get out of bed.

But I don’t want to be useless! I don’t want to think there is nothing left for me to do!

Instead of being suicidal, lately I am just very aggravated! I am not adjusting well to my new normal. Why? Because my new normal is not a good normal!! It is a normal in which I am told that you are dying. It is a normal in which my body just says lay here. I know I need the rest but is it really rest when your mind won’t stop and you feel like why am I even here?

I am not an ego person but I feel like I am not needed anymore. In all aspects of my life! It is not anyone’s fault but it is me just going from being busy to doing absolutely (well hardly) anything. When I was diagnosed with Sarcoidosis I knew it was going to be rough but I had a purpose. Right now I really don’t know what my purpose is??

I know my family needs me and wants me as I do with my friends but it is really tough to go around life when you feel you have no purpose.

Yes this is a form of depression. I know that! But this is different from any other type of depression that I have ever dealt with. It is hard to talk to anyone including my counselor. I can talk but when I get asked how can I help? I don’t know how to answer this! How can you ask for help when you don’t know how anyone can help?? It really is a tough situation to be in. I really don’t know who I am!!

I figured I needed to write this more for myself than probably anyone else. I am in a place I never thought I would be!

ONCE AGAIN I AM NOT SUICIDAL.

I AM LOST!

I DON’T KNOW WHO I AM OR WHAT I AM??

I AM JUST HERE!!!

TO ME THAT IS THE WORSE FEELING I HAVE EVER DEALT WITH!!

Depression

This is going to be a long post! Because this hits home to me and many others!

If you or someone you know is contemplating suicide, call 1-800-SUICIDE (1-800-784-2433) or 1-800-273-TALK (1-800-273-8255).

What happened with Kate Spade can happen to anyone. Depression in America affects over 19 million people. It can happen to anyone. Please don’t ever take it for granted that someone is going to be fine. Learn the signs, learn what it can do, learn what can cause it because there can be an underlying cause. Take it seriously in others and in yourself.
One thing about depression and suicide is that you may not see that someone else may have it or be thinking about it. It has become an epidemic:

According to the American Foundation for Suicide Prevention (AFSP), over 44,000 people try to commit suicide each year in the United States. In 2015, suicide was the second leading cause of death in people 15 to 34 years of age and third leading cause of death in children aged 10 to 14, according to the CDC.

Men are four times more likely than women to kill themselves, and 77 percent of U.S. suicides are completed by men, the CDC said. This disparity is partially due to men choosing more lethal means to kill themselves: 56 percent die by firearm. Women are more likely to attempt suicide by self-poisoning.

“Women more likely to attempt suicide, and men more likely to complete [it],” Campo said.

Why Do People Attempt Suicide?
A suicide attempt is a clear indication that something is gravely wrong in a person’s life. No matter the race or age of the person; how rich or poor they are, it is true that most people who die by suicide have a mental or emotional disorder. The most common underlying disorder is depression, 30% to 70% of suicide victims suffer from major depression or bipolar (manic-depressive) disorder. [1]

Warning Signs of Someone Considering Suicide
Any one of these signs does not necessarily mean the person is considering suicide, but several of these symptoms may signal a need for help:

Verbal suicide threats such as, “You’d be better off without me.” or “Maybe I won’t be around”
Expressions of hopelessness and helplessness
Previous suicide attempts
Daring or risk-taking behavior
Personality changes
Depression
Giving away prized possessions
Lack of interest in future plans
Remember: Eight out of ten people considering suicide give some sign of their intentions. [2] People who talk about suicide, threaten suicide, or call suicide crisis centers are 30 times more likely than average to kill themselves. [3]

If you or someone you know is contemplating suicide, call 1-800-SUICIDE (1-800-784-2433) or 1-800-273-TALK (1-800-273-8255).

I have been dealing with Depression for many of years most of mine has to do with my health but other times it is due to anxiety and stress.

I have been on the deep end of depression too many times I would like to admit. It is a never ending battle!

I have said on many occasions that people would be better off without me! But the truth is the people who truly care about you will be affected in more ways than you or I can imagine.

I am so lucky to have a great support system! I have a great wife, a wonderful daughter family that cares. and just as importantly I have an amazing Counselor!!

I have had some real trials and tribulations in my life, some self done and some that happened to me. I am learning that this is just part of life. This doesn’t define me!

I have even thought about committing suicide! Yes people who seem strong get weak too!!

I wanted to post this because I have been dealing with so much lately that I sometimes I forget about what I am doing also. Depression has been in full force since my terminal diagnosis. I am fighting everyday with myself. Right now I hope I am winning. I guess I will never know!