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!

Mental Health is Everyday!

In honor of #MentalHealthMonth!

I am going to put this article/blog in three parts Otherwise it will be too long as one full article/blog. Plus, it will make more sense that way. The three parts have significant Mental Health experiences in my life. Don’t get me wrong there were more but these three had a huge impact on my Mental Health life.

I am writing this because I have dealt with mental health all my life. I didn’t know it, but it has been an integral part of my life since I was a child. Now this piece is not a pity piece at all. It is a real honest look at my life.

Part 1

Since I was younger, I always had something going on. At the age of five I was diagnosed with leukemia. I dealt with going back and forth to the hospital for treatment and not being able to go to school for four years. I didn’t realize it back then, probably because I was too young to understand. I also put it in the back of my mind. I guess I felt I needed to put this time away because it was too much of a tragedy. Well let’s just say that my health was just part of the tragedy of that time. You see while dealing with my medical issues as a child I was also dealing with mental health issues and stressors of a life that was challenging.

You see all my life my mother was sick. She had heart problems since she had a major illness as a child.  She was pronounced dead at least three times in my childhood alone. One specific time was in 1975, my mother was in the hospital (her 2nd home), she was intubated and the doctor at the hospital was in my mom’s room talking to my grandma. He told my grandma that my mom wouldn’t make it through the night, right in front of my mother. She was in a medically induced coma at the time so the doctor didn’t think my mom would hear him. Well, the next morning came, and my mom had woken up and when she had the tube removed from her throat. The same doctor who said she wasn’t going to make it through the night was there. She looked at him and said (I’ll keep this PG), “F- You” doc. You see she did hear him, and she told the doctor “Hey you! I don’t see any toe tag or expiration date on me.” There is a reason I told this story as you will find out later.

Well while I was fighting the battle of leukemia from the ages of five to nine, I also had to fight a battle that might have been worse. My mother being as sick as she was had to put us in Foster Care. There are four of us, two older brothers and me then my younger sister. Department of Social Services split us up in two separate groups and homes. My two older stayed in one Foster Home while my sister and I were in two separate homes. The first one was terrible, and that is putting it mildly. They were mentally and physically abusive to both me and my sister. You see I was only seven going on eight and my sister was two years old. The people who were watching us had three or four more foster children as well. If you know the system, you will know there are some families that foster because they want to help children and others who do it for the money. You see every time a foster parent takes another child, they get paid money by the government that is supposed to be used on the child’s well-being. Well, our first foster home didn’t care about our well-being or how we were. They treated us as if we were a nuisance in their lives. I was very sick and had to go to the hospital often. It was part of my chemotherapy that I had to do to live. Then it was the other kids picking on me and my sister because I was the sick one and they thought I couldn’t protect my sister. On the second part they were wrong, you see my whole life I was very protective of my family just as my older brothers were of me.

I got in many fights in the beginning, but the other kids realized even though I was sick and so small I was someone who wasn’t going to let them bother or tease my sister. If they teased me, I was okay, but don’t do it to my family. As small as I was, I never backed down. I guess it was a good thing growing up with two older brothers, they taught me to protect myself and my sister who was five years younger. I would get beat up or did I? Looking back it was always them who was crying and screaming “Get this guy off of me!” I didn’t stop until an adult pulled me off them. Some other forms of abuse was if we didn’t finish a meal that would be our next meal and so on. Imagine having macaroni and cheese for three or four straight meals. They never took into consideration that I was sick and was on chemotherapy, so my appetite was not strong at all if existent at all. One episode we were all in the car and somebody put a hole in the car seat. I took the blame because the other kids were going to blame my sister. My punishment was to stay in my room for 30 days straight. The only time out was to go to the doctors or to go to the bathroom. No television, no books, nothing not even a light. To this day that time scarred me. Right after my 30 days the parents were treating my sister really bad. I believe to this day that they thought my sister put the hole in their car seat. So, I decided that we needed to leave. When we had visits from Social Services, they never believed “our stories.” Why would they believe two young kids over two parents?

So, I knew I had to do something drastic. Well, some would say crazy. But you must understand that my life was always protect. Whether it was my sister or my mother I was in survival protection mode. It was the only mode I knew.

What happened next, I wouldn’t have believed it if it didn’t happen to me. I put my two-year-old sister in a little red wagon and a bag I collected of some of our clothes and ran away. Yes, a sick seven-year-old and a two-year-old ran away. I learned I had to grow up fast. I am sure you are wondering where did you go? Well, I remembered my great Aunt and Uncle didn’t live too far. But what is too far for a seven-year-old? I was going to find out. I knew I had to stay by the docks, but I had to walk on a major road sidewalk. As I look back at this, I realize now how crazy this was. At the time I didn’t care. All I cared was how I needed to protect my sister. I was told later that I walked over a mile with my sister in tow. We got to the house, and they were totally shocked. At first, they didn’t believe me, until I showed them a burn mark on me. Not just any burn mark but a cigarette burn mark.

I remember the police were called and then Social Services were called, and they decided we weren’t going back there again. You see no child should have to go through that ever! It turns out my mother was out of the hospital and Social Services let me and my sister go back to live with my mother, but my two oldest brothers stayed at the foster home until they saw that my mother was strong enough to have all of her children.

Unfortunately, that didn’t last long. One of my most vivid memories of my childhood happened. While living back with my mother we got robbed. I wish that was the worse part about it. I was in the bedroom and the head of the bed was right by the door. I saw three guys break into the house. They went into my mother’s room, and I heard them talking. I was able to see each one of them because they passed me to get to my mother’s room. I also heard their voices so I could understand when the one white guy decided he was going to “wreck her face.” The two other black guys were yelling at him “NO!” But he didn’t listen. He used a razor to cut my mother’s face. I remember hearing my mother say don’t hurt my children. Well after that they left. They stole all my mother’s money and left.

I waited a minute or two then ran into my mother’s room. I was horrified with what I saw. To this day I can see it so vividly, my mother’s face all cut up and bleeding. My mother turned away from me and told me not to look at her, of course she was trying to protect me. Then she told me to go to the neighbor’s house and wake them up. For me the only one I knew that could really help her was my now stepfather and his family. They were two or three houses from ours. All I remember was running there and bagging on the side door and what seemed like an eternity, I banged and pushed on the door with all my might, and the door opened. Still, nobody heard me, so I was crying uncontrollably, and I broke into someone’s else house. They heard me when I broke in and I had two adults running at me as if they were going to kill me. They thought someone broke in. There they find a little boy crying and trying to tell them what was going on, that is when my now stepfather took off to my house.

All I remember past that was me seeing my mom on a stretcher being put in the ambulance. That event was so traumatic, and I probably should have seen a counselor. But at that time, seeing a counselor was something you did only if you were “CRAZY!”

My Dedication to My Sarcoidosis Brother Rodney Reese

I am going to preface this by saying this is one of the hardest things I ever wrote before.

On Saturday we lost a great advocate but more importantly we lost an even greater man. Rodney Reese was so many things to so many people that knew him. He was a husband, father, son, brother and most important to him he was a grandfather. He always talked about his family. The love of his family was always present with Rodney.

 For those in the Sarcoidosis Community that didn’t know him he should have touched you for the things he stood for and his actions for the Sarcoidosis Community. He was always thinking about how he could help someone or how he could make it better for those who couldn’t help themselves.

Rodney always had this great presence when he walked into a room. You always knew you were with a very educated calm force. He always showed that grace, charisma, and had a charm that you were always drawn to.

Now Rodney to me was so much more. He was one of my best friends. He was my brother. We have been talking online for about ten years. We finally met physically at our first FSR Ambassador training with the original 15. We met and right away we hit it off. That is being mild about it. We were brothers right away. We talked during dinner, then some of us went to the hotel upstairs bar, we talked some more. Okay when I say some more we talked until the bartender said last call and our wives called us. We looked at our watches and saw it was after 4am. We had no idea of time. Nobody would have thought we just met for the first time. It was just that easy! But that is Rodney Reese! The next day we paid for it because we had a full day of training on maybe 2 hours of sleep. Did we care? No. We were there to meet others as well as learn.

Rodney was someone who would give me a calm feeling, as you all know I can be a bit “in your face, hothead at times.” He always knew what to say to get a smile out of me when I was going off about something. He also knew when it was time to let go as well and join me on my tirade. We worked hard and loved hard when it came to our advocating. I knew if I came up with an idea no matter how crazy or how quick I wanted to get it done. He would always say to me “I am in. You can count on me. Just tell me what you need me to do.” Every time I needed him; he was there. Even if he wasn’t feeling well, he would let me know he could do only a little bit, you could tell he felt bad about it. It didn’t matter to me if he did a lot or nothing at all, what mattered to me was that he approved. He was my mentor, that was unsaid, but I hope he knew he was. He always said, “How did I have the energy to do what I did?” He was very quick to give me a compliment. Like I said he knew how to make you feel better.

The second year there was another Ambassador who joined us, Paul Dickerson, an amazing man as well. Paul, Rodney, and I hit it off so well. People started to call us the Three Amigos. We hung out together at the training and even went out afterwards. The three of us would keep in touch. At that time, I wasn’t doing that well health wise and having those two positive people always made me smile.  All three of us would call each other to see how we were doing. It wasn’t just a wellness check either, we would talk to each other for over an hour at least. But we never hung up the phone without saying “Love you brother.” Paul started that, but all three of us meant it.

In 2018, I was going through many health issues even being told I was terminal. It was those two brothers that helped me so much mentally to fight for my life.

Then in May 2018, Paul passed away. That was so hard for the two of us. Rodney and I talked that night for well over an hour. One thing we kept was “I love you brother.” You see Paul’s death hit both of us real hard. It was like losing a family member. I remember us talking about how we had to work harder to help others.  We bonded even more after Paul passed, if that is possible.

We went through so much together as advocates. In August 2019, I remember calling him with another “great idea” I had. I remember saying to him” How about we start an online support group, for those patients, caregivers, and family members who couldn’t go to a face-to-face meeting or didn’t have one near them.” Once again Rodney says, “Sounds great when do we start?” Little did we know what was coming. We started the support group in November 2019. It kicked off and was amazing, still is going.

Then the pandemic hit…. In March 2020 we got hit with the pandemic. I got COVID in mid-March. Rodney and others stepped up. It was a tough time for me, but Rodney was calling checking up on me.

Then when I was getting better, something else happened…. George Floyd, Breonna Taylor, Ahmaud Arbery and others, and the protests. Well, that hit Rodney real hard, and he decided to stay away from the support group, as did others. I remember calling him and I never heard him so mad before in any of our earlier conversations. I just remember my heart went out with him.  I felt so bad, and I thought there was nothing I could do to help ease his pain. I knew and felt his pain. I then made my usual quick idea, yet again. “Hey Rodney, why don’t we do a forum about Civil Justice or In-Justice? He was all for it. He jumped in as much as I did. He introduced me back with Bernie Mac Foundation, he also was able to bring on extra people on the panel. He did so much for that first forum and two after even being part of the panels and stepping in to moderate one of the forums for Mental Health and Social Justice. Not once did he want any credit for any of these forums. He put all the emphasis on me and what I did, but not once did he talk about how much he did to make sure these went off well.

You may ask why I made this dedication so long? Well, you all needed to see the Rodney I and many others like me knew.

He was an amazing man. He was a caring, loving man. He was a Brother to me!

The last time I spoke to him was the second day he went into the ICU. I am not even sure Harriet knew this. He said he had to beg and bribe the nurse to call me. He was on full oxygen, but he was still asking me how I was doing. He told me he was going to fight hard and tried to reassure me he was fighting as hard as he could. He wanted to make sure I was doing fine.

You see, that is what Rodney is and was. Always there, always caring, always Rodney! I am sad that Rodney is no longer with us. Well, that is an understatement. I am devastated. But I can hear Rodney telling me, “Come on, you know better, what is next?”

Rodney you may be gone, but you will always be with me. I know when I have the next idea you will be saying, “what do you need?” You will always be here. You will always be in my heart trying to calm me down again.

Rodney, “I Love You Brother!” I will keep the legacy of the Three Amigos going and forever trying to improve this community!

Happy Six Year Anniversary!! I Guess!

Warning – This subject matter discusses Suicide and other Mental Health Issues

Today is a tough day. Six years ago, I was in a very bad place. It is very hard for me to speak about.  I put myself in a 72-hour Suicide Watch. It was such a bad time of my life. But as bad as it was there was something great to come out of it. I was seeing a counselor for years before and still do. Why did I put myself there? I actually planned my suicide. I had it all down. But something told me to make one call. That call was to my counselor… She talked me into going in the hospital for a 72-hour watch and here I am….

I learned so much about me. I wanted to commit suicide, but I didn’t want to die. I don’t know if that makes sense to you, but it makes so much sense to me. 

Let’s go back to that time.  It was 2015, and I was in so much pain and being told there wasn’t much left for the doctors to give me in medicine. Unfortunately, my body rejected all of the medications in one way or another. Some of the medications worked for six months then my body grew a tolerance toward them all. There are other medications that my body outright rejected due to the other diseases I have. So my body was not my friend. 

I was also in a bad space mentally, if not more than I was physically. I was believing I was a burden on those I loved and those who loved me. Mainly my immediate family. They had to deal with me just staying in bed, going to the doctors, and just being depressed.  

I was not thinking right, well not thinking at all. But what kept coming up was committing suicide. I never thought I would be “that person.” Whatever “that person ” even means. I thought for most of my life that committing suicide was a cowardly thing to do. I always thought I was stronger than that. Let me just tell you one thing. All of that is BS! I am a strong person for knowing I needed help!

It can happen to anyone. All it takes is one moment of weakness, one thought of despair or that you are a “burden” on others. Plus, when you are sick physically it definitely effects your mental health. How can you think right when you can’t get out of bed because of pain? How can you think right when all you hear is “NO?” How can you think right when you are taking medications that mess with your cognitive thinking? 

Now don’t get me wrong, there is no excuse for suicide. There is always help out there if you want it. I honestly knew that back then, just like I know it now. I can’t describe the feeling that I felt back then. The only way I can write it down was it was a feeling of nothing. Just nothing. Nothing was going to help me… nothing and nobody was going to understand me… and worse yet.. I wasn’t going to help me!!

Was I right? No… Was anyone going to tell me I was wrong.. Not in my mind.. 

You see when you are in that state where you think suicide is the only solution, you don’t know what is out there. You don’t know or don’t care, either way your mind is focused in blinders mode. You have a one-track mind.  

 Am I saying that everyone thinks this way? Absolutely NOT! All I can speak is for me. My mindset is not the usual on a normal day so I would bet it is not the same when it came to this.  I always thought I was strong, smart, happy and most of all I thought I would never do this. 

So what got me to that point? Was it the pain? Was it the feeling of being a burden? Was it just feeling pity for myself and everyone around me? Honestly it was all of that and more. The medication didn’t help as well. Also depression and anxiety of living like that for the rest of my life definitely didn’t help it at all.

So why am I writing this? I don’t know.. Well I know some reasons. It has been six years. Six long years! What has changed? Well I feel like I may be a bit stronger than before. I also have been through so much more both physically and definitely mentally. I would elaborate but that is for another time. 

I have lived a pretty full life. Better and worse than I expected, but a full life. Just like so many. I have been dealt some tough things but I have fought hard to get where I am. Sometimes I even fight with myself. But I know where I am now. I know that even though it is not where I expected it to be, it is  what it is.

Boy do I hate that saying.. It is not what it is.. It is what you make it. I made the best that I could with what I had. I can say that I have tried to make a difference. If I had or not is up to others to decide. 

I can say this one thing. Everyday I fight my mental health. Will I think about suicide again? I don’t know.. Will I act on it… I don’t know.. I just know that right now even though I am super stressed out due to physical and mental obstacles, I am not in that place. Right Now! 

We never know what tomorrow brings, do we? I know my present. That is all I know… That is all I can control…

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!


Mental Health and Stigma According to Me!

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Always Coping with my Mental Health

My Patient/Patient Advocate Journey

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

She takes me to an emergency trauma room.

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

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

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

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

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

Why do I keep beating death?

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

What did God want me to do or finish?

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

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

I am still here! I am still fighting!!

I feel I haven’t reached my destiny yet!

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

My Sarcoidosis Journey Now Changes!

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

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

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

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

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

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

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

So here is what is going on with me….

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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