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When Doubt in Advocating Creeps In

Today many emotions have been going through my mind. Well actually it has been happening for the last couple of days. On Friday someone who I called my sister passed away. LeeAnn Bruce was another Sarcoidosis Warrior and more than a Sarcoidosis Sister to me. She was a sister to me. We talked so much … Continued
Frank R

Frank R

9 Min Read

Today many emotions have been going through my mind. Well actually it has been happening for the last couple of days.

On Friday someone who I called my sister passed away. LeeAnn Bruce was another Sarcoidosis Warrior and more than a Sarcoidosis Sister to me. She was a sister to me. We talked so much during our fight with Sarcoidosis, you teaching me so much and I walked you through some Sarcoidosis information. We talked about life. We talked about death. We talked only a couple of weeks ago. We had a short conversation, but a very impactful. We talked about life. We talked about what we were going through and what our mind set was. We knew that whatever we were going through we would fight and smile as much as we could. We both knew we were and I am still facing is not only up to me but to God. Yes we both knew and know when it was or is or time it is our time. Whether we like it or not. All we can do is try to be at peace with ourselves.

You see LeeAnn told me she was at peace with herself. I am so grateful for having that conversation with her. I know that is being a bit selfish, but you see this is what goes on with us that are chronically ill. We wake up happy to see the next day. We never know when we go to sleep if this will be our last day. I know people are going to say nobody knows what is going to happen tomorrow, yes that is true, but to have a chronic illness or worse yet being terminally ill is just another reminder that your life is different than most people.

Now LeeAnn passing hit me so hard. I am not one to show my emotions, When I say that I barely show it to my wife, daughter or even my counselor. I know they know I am sad and having a hard time but I hardly ever show how much I am hurting. You see LeeAnn’s passing hit me as hard as any other person that I know with Sarcoidosis has passed. There have been way too many people with Sarcoidosis that have passed. I know that each one is as bad as the other, but you have to understand there have been three in part that have hit me so hard, not because of anything but because of how close I was to them.

The first one to devastate me was Andrea Timmons. She was the very first person to actually reach out to me when I told everyone on Facebook I have Sarcoidosis. I went into her Facebook group TOSS. It was the first group I went in about Sarcoidosis. She greeted me with her usual amazing upbeat greeting! She knew I was brand new and scared. She came into my messenger and talked me through so many feelings. She always checked on me. We talked whenever we could not just on messenger but on the phone. She went through so much in her life, but she always made time for me, especially when I was going through surgery after surgery. She also talked to Diana, my wife to help her out. She was truly amazing! I always wished and wish I can be half of the person she was. When she passed it truly broke my heart. It also broke my spirit for awhile. But I remember that Andrea is the one who talked me into being an advocate. In her exact words ” Do you realize what you are capable of doing? You have the power to make a difference in people’s lives!” That always rings in ears and heart! Someone so special had that much faith in me to make a difference! Someone who made a difference in so many people’s lives actually had faith in me and inspired me to do what I have done and still do!

Then I got a call from Kelli from FSR ( Foundation for Sarcoidosis Research) ” Frank I wanted you to hear this from me before anyone else. Paul Dickerson passed away!” I thought I was dreaming! More like a Nightmare! His wife wanted me and some others to know before everyone was told. Wow! She found out her husband passed away and she took the time to tell Kelli to call me and some others before anyone else knew. You see Paul is another amazing Sarcoidosis Ambassador, but he was so much more than that to me! He was my friend, not just any friend but one I considered to be one of my best friends. When I met him at Ambassador training I knew he was so special. His insight and demeanor just put me at peace. He always told me ” You are my hero!” But he was my hero! I told him that. He always just shook it off as I haven’t been through half of what you been through. I said to him ” It isn’t how much we have been through, but our fight to get through what we are faced with!” We used that as our mantra of life! We talked in emails, messenger, and the best times were on the phone. We talked about how we could help each other out. We talked about our struggles but most of all we talked about family and life. One thing I will always remember from our talks whether on the phone or in person, there is one thing we always ended our conversation with! ” I LOVE YOU BROTHER!” He always told me that! Of course I would say it back, why? Because I truly loved and will always love Paul! We weren’t “blood brothers” but we were BROTHERS! Blood isn’t the only way to be brothers. So I am going to stop this paragraph by saying “PAUL I LOVE YOU BROTHER!!”

You see when you advocate for something like a rare disease or chronic illness, there are times when you truly look at your self and say ” Am I really doing the right thing?” You ask yourself “Am I actually making a difference?” “Why do I do this?” “Should I just stop doing this?” It is normal to have these feelings, especially when you see people dying so often. I know I am doing this for a reason. I know I have made people think. But is that enough? I guess that is for someone else to decide. I know I doubt myself many times, but like I have told these three people, no promised these three people “I WON’T QUIT FIGHTING FOR THOSE WHO CAN’T FIGHT FOR THEMSELVES!”

I don’t want to sound conceited or anything of that sort. But I do know I found my calling! I got these diseases for a reason. Whether I like it or not, I got these diseases to help others, but most importantly to help me. I got these diseases to guide me to do something and be somebody I have always had inside of me. I am a fighter. Always have been always will be. I made many mistakes in my life. I am not proud of them, but it truly brought me to this place. It made me fight not just for myself, but for so many others. Many of them who aren’t able to fight for themselves. If you would of asked me when I was a kid this is where my life would of taken me, I would of laughed, well maybe not laughed but definitely would not of believed it. I never considered myself a fighter. For a long time I considered myself a survivor. There is a big difference. A survivor is someone who does things so he lives. A fighter is someone who does things not for just myself but for others so they can live as well as I can. I have considered the difference for a long time. What makes me different now compared to me before? Well part of it is maturity, another part is learning who I am and what I want to do. I know that the odds of them finding a cure for me is very small. But knowing I can get us moving in the right direction and also if I can help someone find a doctor or recommend some medication help to ease their pain or might even put them in remission is what keeps me going. I have come to terms about me and my health. They are trying to pull a rabbit out of a hat. Doctors have basically said that we are trying to make you feel comfortable. That is a weird feeling, but I know I am going to be okay. Honestly no matter what happens to me I will be okay. Am I ready for death? Is anyone truly ready? I can say this.. I am at peace! I am scared but at peace!

So here I am day three writing this blog. Never knew this was going to be so hard to write. Like I said in the beginning so many emotions going through my head and my body. Lots of crying, lots of soul searching and lots of praying that whatever happens that these people who keep on dying due to this terrible disease called Sarcoidosis aren’t dying in vain.

I just got home from my Rheumatologist and we were just discussing this. He says why are we so far off on discovering anything about this disease? That is a doctor who has so many Sarcoidosis patients asking that. Truly a scary thought.

Well I promised so many people, especially these three great people, that I won’t quit fighting for them and all of those of us that have this disease. I can’t quit! I won’t lie I have thought about giving up! I won’t give up! It isn’t me! I have to fight! Not only for all those people but for me! I give up on fighting, I give up on myself!

Like I have said so many times ” I HAVE SARCOIDOSIS BUT IT DOESN’T HAVE ME!” IT WILL NEVER WIN! I MAY NOT GET A CURE BUT IT WILL NEVER BEAT ME!!

For all of you that have been affected by LeeAnn’s death, which is many, don’t give up! LeeAnn never gave up! Andrea never gave up! Paul never gave up! I never gave up!

“YOU ARE NOT ALONE!”

Author(s)

  • Frank R

    I advocate for the Sarcoidosis Community for all of those who can't advocate for themselves!

    Stronger Than Sarcoidosis

    Frank Rivera is a published author of two books "Walking in Silent Pain."  and "I Have Sarcoidosis but it Doesn't Have Me." Both can be found on Amazon. Frank Rivera has also published a medical paper with doctors, researchers and fellow advocates.Comprehensive #Patient partnership paper: Health-Related Quality of Life in Sarcoidosis: Diagnosis, Management, & Health Outcomes https://t.co/niiwZxUj7j Sarcoidosis of Long Island and Stronger Than Sarcoidosis have grown into an advocating organizations to fight for the rights for people who have this rare disease called Sarcoidosis. We fight for those who can't fight for themselves. We work with local, county, state and national government officials to gain recognition and raise awareness for this rare terrible disease Frank Rivera- President- Founder/President- Sarcoidosis of Long Island Founder/President- RareNY Thrive Global- Author and Blogger Frank Rivera founded Sarcoidosis of Long Island in 2012. In 2011 Frank was diagnosed with Sarcoidosis after being misdiagnosed with lung cancer for 7 years prior. Since opening Sarcoidosis of Long Island he has been a local, state and federal advocate for Sarcoidosis. Frank strives to raise awareness for Sarcoidosis nationally, but specifically in the government sector. He has represented the Rare and Sarcoidosis community as a speaker at two Congressional briefings for Sarcoidosis. Frank is a National Ambassador for Foundation for Sarcoidosis Research. Named RUGD Ambassador for Illumina October 2017 Frank organized RareNY in 2016, to raise awareness for Rare Diseases in the state of New York. He organized “A Day for Rare Diseases” on October 15th, 2016 in Long Island NY, in partnership with Global Genes, to raised awareness for all 7000+ rare diseases. In recognition of Frank’s efforts, Suffolk County and the town of Brookhaven officially declared October 15th “A Day for Rare Diseases”. Frank was nominated by Global Genes, a nonprofit that serves the rare disease community, for advocate of the year. Global Genes has also nominated Frank for their annual Rare Champion of Hope award. He has also been nominated for seven awards by WEGO Health partners over four years, Patient Leader Hero as well as Best Kept Secret, Lifetime Achievement Award and Best in Show Blog. He was also nominated by RDLA for advocate of the year. In December 2017 Frank was named People of the Year in the newspaper organization TBR News Media six newspapers one being The Village Beacon Record News. In 2018, Frank was interviewed by NBC Nightly News about the “Right To Try” bill. They did a whole segment on his struggles and strength dealing with these diseases. In 2019, Frank Rivera has promoted Awareness for Sarcoidosis with a billboard in New York Times Square on multiple occasions. Posting Sarcoidosis events, and Sarcoidosis of Long Island and Sarcoidosis patients getting a chance to show their faces in Times Square and their stories. He has also been in multiple television,podcasts and radio interviews both local and nationally raising Awareness all while being downgraded from chronic to terminally ill. He refuses to let his illnesses win and take over his life. His motto is "I have Sarcoidosis but it doesn't have me!" In 2019 his organization has worked on the motto of #YouAreNotAlone. Making sure no Sarcoidosis, and all rare disease patients know they are not alone and we are here for them for advice, support and will help find medical and mental health professionals when needed.