My Sarcoidosis story:
This is an ongoing report of my life as it happened… Please bare with me!
Hello my name is Frank Rivera. I am 49. My story actually goes back to 2004. While in Florida I was found to have multiple lumps in my lungs. After a biopsy they told me I had lung cancer. That rocked my world, I thought life was over for me. In the meantime I ended up moving to Oklahoma and getting chemotherapy and radiation for almost 4 years. I was down to 98 pounds at one point.
In 2009 I ended up back in New York.
Well my fiance at the time, now my wife, Diana got pregnant and was due to have the baby in April of 2011. Well unfortunately Isabella Joy Rivera was born in January 3rd due to complications after only 25 weeks. She was too premature and passed away on January 8, 2011. It broke our hearts to the core. That was the hardest thing I ever dealt with, including me being sick. At least when I am sick I control me, there is nothing worse than not being able to help your baby to live!
I didn’t even have enough time to mourn her passing, because on January 23, 2011, I went to Mather Hospital for lower abdomen pain. And they took X-rays and CT Scans. They told me it was my IBS acting up. Well in April of 2011, I went back to the hospital, due to the same stomach problems, as well as breathing problems. According to the Dr. there he asked me if I knew I had 2 lumps in both of my lower lobes in my lungs since the January visit. I was shocked thinking my lung cancer had reappeared. So I went to an oncologist surgeon who took a biopsy of my inflamed lymph nodes and found out I have Sarcoidosis. I was like what is that?? I never heard of it. Well little did I know what kind of roller coaster I would be on since?
I also found out, by Dr Padilla of Mt. Sinai Hospital, I was misdiagnosed about the lung cancer in 2004. I was first diagnosed in my lungs and lymph nodes and it grew into my neurological system, then in my eyes (uevitis), then it has attacked my gallbladder, which I got removed in July 2011. Then since the only approved medicine for Sarcoidosis is Prednisone, they put me on 40mg (steroid) it started to eat away at my colon. Between that and my Irritable Bowel Syndrome and my Diverticulitis, in October of 2011, I was in the hospital for 25 days before I had a resection of the small colon. They removed about a foot of colon. All the while I was still on 40 mg of Prednisone as well as Klonopin, for the tremors, Zoloft for depression, Mysoline also for tremors, Protonix for the heartburn and Advair for the lungs and Naproxen, which I never should have been on due to my bad stomach and colon, for the arthritis.
In April 2012:
I went back into the hospital for abdomen cramps to find out the my colon ruptured and I ended up with sepsis. I almost died, was told by my wife that they said I had a 33% chance to live. I was on life support for 3days and don’t remember those days at all. I had a colostomy bag put on me. When I did wake up the doctors told me I was a miracle to be alive. I only remained in the hospital for another 3 more days. They decided to taper my Prednisone to 5mg and took me off of the Naproxen.
In May I got I got a new rheumatologist and he put me on 15 mg of Methotrexate, then 20mg, and Remicade, and physical therapy due to the Sarcoidosis arthritis. In October 2012 I had another surgery for the removal of the colostomy bag. Now I have to deal with the colds that the Methotrexate, which is a chemotherapy pill, that makes me susceptible to other colds and also the upset stomach.
I received another surgery in August 2013 for an incisional hernia. They ended up putting a mesh in by my hernia.
I just want to let everyone know that no matter how hard it has affected my life, I will keep a smile on my face. Even though I am on disability, I know that it may have changed my life but it won’t run my life. I refuse to give into this disease, don’t get me wrong there are days where I cry and ask why me. I just answer myself by saying God only gives you what you can handle. I use a cane now and then but that doesn’t define me. What defines me is the strength to carry on. Sarcoidosis is what I have not what I am! My mission in life is to help others with diseases that on the outside you look fine, but on the inside the pain is unbearable.
In December of 2013, I ended up having another surgery to fix the mesh of the hernia so that makes a total of 6 surgeries in 3 years. But I am still here kicking and fighting.
My Sarcoidosis thoughts continued:
As I live and move forward with this disease. I sit here this morning thinking about this disease, Sarcoidosis, there are many people with Sarcoidosis that do get many other problems, some are associated with the disease then some are associated with the medicines. Sarcoidosis is classified as an inflammatory disease, though it takes on many other diseases like symptoms. That is what makes it so difficult for doctors and scientists to get a hold of the cause and cure. We as people who have Sarcoidosis have to be diligent in our own care, by keeping up to date with the medicines, and new ways to combat this terrible disease. We have to be our own doctors and learn to not just accept everything a doctor says is always right. Don’t be afraid to ask for a second or a third opinion until you feel comfortable with your doctors and your care. Each one of us “Sarkies” need to control your own care by being aware of your care and what your body needs and how it feels.
One thing that I feel as a Sarcoidosis patient is that us as a “community”, maybe not one that we wanted to be part of, but we are, need to gather together instead of everyone having their own agenda. We all have a disease that effects everyone of us in a different way but it still is the same disease and there are many ways we could work together to get funding and acknowledgment that this disease needs. We need to get our priorities together to help those that really need it. I am not saying you don’t need it but there are many people without insurance and basic medicines and can’t get a simple X-Ray or CT Scan. I know that I am not perfect and will never be, but I do know one thing. I would do as much as I could, legally, to help others. I am not trying to put myself on a pedestal, but us as a “Sarkie” nation, which many of us do, need to get together and get this whole movement working together. We are all in it for the right reasons, now let’s keep the momentum going so we can all get this disease controlled and then see it go to the waste side.
I want everyone to know that I DO LOVE YOU ALL. I am sure some of you may doubt that and even doubt my ways of fund-raising and advocating. We all have our own ways and we are all determined to get it done, that is why we are stubborn, otherwise we wouldn’t be doing this and fighting this disease.
A couple of things I wanted to say before I close this note! Don’t be afraid to be afraid; don’t judge people for how they react to the disease also. Each person is different and has different symptoms and pains and aches. The best thing I could tell anyone who has any type of disease. Your mind has an amazing power! It will either help or hinder your success or failure. Your mind is 90% of your recovery. I know from personal trials and tribulations that if you don’t think positive and give up your body will follow. It is always easier said than done, but if you can’t do it alone don’t be afraid to go out and get help. There are many places that will help for cheap or no money for that matter that will counsel you and help you. Don’t think you are weak if you are talking to a counselor. If anything it makes you stronger to realize you can’t do it all by yourself.
Another thing is your family. You have to remember not everyone understands what you are going through or will ever understand. Family may not be blood. It can be even a stranger that you can talk to who understands and doesn’t judge you. I personally also think a family member or friend should be able to kick you in the butt sometimes, but must understand that sometimes for a patient “No means No.” But as patients don’t take your disease as a death sentence and also don’t think that every pain means something new is going on and is related to your original diagnosis. Sometimes it is what it is. Learn our body!! Know its quirks, pains, aches, instabilities.
I wrote this just because I hope it may help one person! If that happens I will be ecstatic and will know I made a difference in someone’s life! I am always just a message away if you need me! My email is email@example.com. If I don’t get to you right away it doesn’t mean I am ignoring you. Most of the time it is because I like you are dealing with the same things and insecurities you are going through.
As of right now I am dealing with a bout with Bronchitis bordering on pneumonia so back on the steroids I go for a Blast hopefully only, but 3 days into it I feel the same or worse. But I can’t spend my life in bed. I am staying in the house as much as possible but I might as well be in the hospital if I have to stay in bed all day.
I started this Non-Profit group called Sarcoidosis of Long Island. It really has been a tough go at it, but worth the challenge. If we can help just one person than it has been worth it. We have had 2 Sarcoidosis 5k Fun Runs, A movie fund raiser, and a Friendly’s Dinner Fundraiser.
We have received proclamations from the Town of Brookhaven, the County of Suffolk, our State representative, and US Representative as well as US Senator Charles Chuck Schumer. We also have a support group for the locals. I am proud that a man who on April 2012 had a slim chance of living has gotten this far. There have been setbacks but you roll with the punches and get back up again and start again. Lately the “flare Ups”, Sarcoidosis flare ups are very tough, it is in my lymph nodes, lungs, neurological, arthritis, eyes, GI system, skin. Add to that IBS and good old Diverticulosis and it is so much fun. But all in all I am alive thanks to God and my wife Diana and her family and as well as some of my family members and friends!!!
Just an update to all that want to know… This winter has been extremely tough due to the cold and snowy weather. I have dealt with many different issues including my stomach pain- another hernia that they won’t do surgery on because of the other problems, flu,- had a terrible case of it that came back, bronchitis, and they took me off Remicade because it wasn’t working and my arthritis and joint pains got worse. They are going to start me on Humira and see how that goes. I went to an allergist and found out I have environmental allergies. Started on allergy shots but had a terrible reaction on them, so bad they had to give me 40 mg of Prednisone. So no more allergy shots. I also have to get hearing aids for both ears! Fun! Just another day in the life of a Chronic Sarcoidosis patient.
Good news is in April, Sarcoidosis of Long Island is going to be working with The Town of Brookhaven for a walk through Beautiful and Historic Stony Brook on April 25, 2015. It will coincide with Foundation of Sarcoidosis Research 5k walk/run for Sarcoidosis Awareness Month. We also will be going to a Town Hall Meeting on April 16, 2015, where I will speak to the Town Hall and The Town Hall Council members will be wearing Purple for that day in April. We also had Council member Valerie Cartright at one of our support group meetings. She was amazing and is partnering with me to raise awareness for this dreaded disease.
Thank you very much Rachel Platten for your song “Fight Song!” It has inspired me so much lately!!!
Here is my thoughts lately of my disease, Sarcoidosis. I have been very angry over this disease. It has been a roller-coaster of emotions, physical and mental items. Let’s just say not all is bad. I have had some real good things happen to me on the personal level. Now on the medical side it has been tough. My neurological issues seem to grow and have made me scared but also weary of what is Sarcoidosis related and what isn’t. With this disease you never know if the Sarcoidosis has taken over or if it is some other medical problem. All I know is that it makes it so difficult to understand what is going on with my body except that something different is going on, dizziness, muscle pain, memory loss, and other things. I am also very angry because ten people I knew that had Sarcoidosis has died very recently. One of these people was an activist for the Sarcoidosis cause, Andrea Timmons. She was the first person I talked to online about Sarcoidosis and we talked so many times on the phone when I was in the hospital or when she was. I will never forget Our Lady Bug!
I am frustrated at the government aside from my local government, Town Of Brookhaven, and Suffolk County, but my state, and the federal government seems to just ignore it. How many people have to die before someone wakes up!!! Sometimes I feel like I am fighting a losing battle, but I know I will never give up fighting because if I give up then what do I have left with my life. I love to help others and hope we keep getting bigger so we can make more of a difference. We do have an Andrea Timmons Sarcoidosis 5K Walk on August 29, 2015. We are really getting some support from the local NY sports teams as well as Karen Duffy, actress, and also a fellow Sarcoidosis patient. We are also getting local sponsors that have been great. I will list once we get them all! We are trying to work with the local 9/11 First Responders who have Sarcoidosis also due to the high heavy dust from the area. We are also trying to work with media people to get coverage also. I really want to make a splash to raise awareness and help many people who can’t afford medicines and cost of living.
On October 5, 2015
I was picked to go and speak in front of Congress. One of 7 great people. It was a great experience. Since that day I want to help everyone, but I know I can’t. I am always in pain and don’t see that changing. But oh well!!! I really have learned in the past couple of weeks how bad my Sarcoidosis really is, when I tried to do some easy things that I could do easily when I was healthy. Makes for a depressing time!!! It was so depressing, that I had bad thoughts. After all the tests, I have been diagnosed with Sjogrens Disease. All of these diseases are related somehow.
I am changing my medicines when I get back to fight off another disease. It keeps on piling on. It brought me to a very dark place. One that I never thought I was going to climb out of it.
Recently my kidneys are leaking proteins, either my liver or bones are leaking enzymes and I have a heart murmur. So I don’t know how much longer I can fight for everyone, so each day I try to fight my best. Now I am honored to be going to Washington DC for the EveryLife Foundation for Rare Diseases Congressional Annual meeting on November 4, 2015. I am the only one from Long Island and the only one to represent Sarcoidosis. It is a networking meeting to meet up with Senators and Legislatures followed by a gala. This is huge for Sarcoidosis because we can get some government momentum about the needs of Sarcoidosis patients and the need for information and acknowledgment of a rare disease.
Time to up date some more. I have been told by my PCP that it is time to go back to Mt. Sinai Sarcoidosis Clinic. My disease has advanced to a point that my other Doctors are running out of options. So it is time to go back to the experts. I am hoping that they can really figure out what is going on with my body. The pain is excruciating, on a scale of 1-10 I am living in the 8 zone. But on the bright side, My county Legislature Kara Hahn is going to help raise awareness in Sarcoidosis. Also my US Representative Lee Zeldin is going to help me raise awareness on the federal level. Also FSR and I should be working together with others to try to bring all of the Sarcoidosis groups together so we can send out one message to the government. We will get it done!!!
January 7, 2016-
More updates for the new year! Our county Legislature Kara Hahn is really helping me with a new project that we hope will be so cutting edge for our disease. We will have a Seminar class for Pulmonary Doctors in Suffolk County Long Island New York in April for Sarcoidosis Awareness Month. If things work out FSR will be there also as well as The Suffolk County Health Committee. I also finally got NY State Senator Kenneth LaValle to write an order that will get passed in February making April Sarcoidosis Awareness Month in New York State. I just got a call today from Suffolk County Legislator Kara Hahn’s office. I have a meeting on January 14, 2016 with the Suffolk County Health Department Commissioner and her to discuss our plans and how we can accomplish our plans for a Seminar with the Pulmonary Doctors of Suffolk County and also to work on a date so we can get the ball rolling. I want to thank you, Kara Hahn, for all your help. I also want to thank Valerie M. Cartright for supporting me throughout all of my work on Sarcoidosis Awareness.
I personally am going back to Mt. Sinai Sarcoidosis Clinic, because I have been diagnosed with Sarcoidosis in over 80% of my body. It has gotten so bad that my pain level is always at a 9-10. I am seeing Dr. Morgenthau, an amazing doctor. I am very hopeful that I will find some sort of balance in my care. Now to get balance in my life with my Health and my Advocating.
Just some more updates to my story. Plenty has happened since I last wrote in my note. Let’s see. I went to Mt Sinai and found out my many diseases are blocking my treatment. If things don’t get better I may have to get off of all my medicines and start from scratch. Needless to say that will be crazy tough. So they have tried new treatment for my left eye so I don’t lose the vision called Prokera. It went amazing! So I am very happy about that!!
On the Advocating front.. It has been a whirlwind! From Feb 28-March 4th I was in Washington DC for Rare Disease Week and also advocating for Sarcoidosis Awareness! Met some amazing people while at Rare Disease Week, Elisa DeBellis Seeger, Mari-Elaina Garcia, Stephanie D Fischer Jesse Marimat, Lisa Sukel Schill, and Shira Rose to name a few. They really made this visit amazing. Also all the fellow Sarcoidosis advocates, Cathy Wick, Cathleen Terrano, Alesia ONeil, Zakiya Moza Aziza Asiya, Jenny Hinton, Rebecca Remington, and Aretta Hairston-Smith. I also was named FSR patient ambassador, which is such an honor. Also I have been working with New York State to get a resolution making April Sarcoidosis Awareness Month. It came through last week. Also received a letter from President Barack Obama for my hard work and dedication, what an honor. Last but not least I have been working on getting a Federal resolution and thank to Senator Schumer’ aide Morgan Brand, and US Representative Lee Zeldin’s aide Matthew Scott, are making resolutions to make April Sarcoidosis Awareness Month. I am also in the process to have a Rare Disease Day at Stony Brook University Hospital, It will be an event to help raise awareness for the 7000 rare diseases. As you can see I have been quite busy. I just hope to keep my health up and keep that balance.
November 17, 2016-
Update- I was nominated by Global Genes for advocate of the year, what an honor! I had a great event “A Day for Rare Diseases” on October 15,2016. We had speakers from all different aspects of Rare Diseases. We had government officials, from who spoke as well as came to represent and support the Rare Disease community. We also had great speakers from different aspects of the rare disease community. I have to thank all of my sponsors, Global Genes, EveryLife Foundation, WIRC, Foundation for Sarcoidosis Research, Angioma Alliance, Aiden Jack Seeger Foundation, RAS and IPPF. The event was such a success thanks to Diana Small-Rivera, Nadia Bodkin, Kendall Davis, and all of the other volunteers.
On a more personal note- I have been having a tough past couple of months physically. I have to have surgery number 7 in December. I just hope they find what they are looking for this time. This disease has been kicking my butt, but with all that I am still fighting and advocating. We need 21st Century Cures Act passed in this next session of the Senate. #CuresNow
My goal for next year is to get Sarcoidosis Awareness Month of April through the House of Representatives and The Senate. We had it put up last year now we need to get it passed this year!!!
It has been a long time since I wrote more on my story…
On the Sarcoidosis and Rare Disease front February and March, FSR and Sarcoidosis of Long Island hosted another Congressional Briefing. It was a huge success. I as well as three others spoke at the event. April was a very busy month, it is Sarcoidosis Awareness Month. We had a huge support group meeting with Council woman Valerie Cartright and Suffolk County Legislator Sarah Anker were able to attend as well as counselor Debby Knapp to show support for Sarcoidosis. Sarcoidosis of Long Island also was able to host a fundraiser at Buffalo Wild Wings. It was a great success! We also had our 3rd Annual Sarcoidosis Awareness Walk. It was held in conjunction with walks all over the world on the same day for Sarcoidosis.
I have been through a lot since November. I had surgery in December for scar tissue on the mesh for the hernia. I have been dealing with a lot on a medical front. I was diagnosed with fluid and more granulomas in my heart, I also have a retinal hemorrhage.
The big diagnosis has come recently. I have been diagnosed with Parkinson’s. That was a real shock. I was diagnosed years ago with essential tremors, which I found out was misdiagnosed. I am just starting on a new medicine for that, Carbidopa-Levodopa. It is a build up medicine, I am on week 4 now. The shakes have been pretty severe at times. I won’t lie this is a tough diagnosis. It has nothing to do with the Sarcoidosis. I am still trying to get through this new obstacle, but I will fight this just like everything else I have done.
When does all of these new diseases stop!
One last thing for this post! I am working on a huge project…
I am working with the Town of Brookhaven and Suffolk County first to help those rare disease patients and caregivers with mental health. Sarcoidosis has lost too many people lately and especially due to suicide. But that is just one rare disease, so many rare disease patients and caregivers suffer mentally as well as physically. So my new project is to help those with rare diseases and their caregivers receive affordable or pro-Bono counseling. This is a huge project I know but I will get this done! I can’t see anymore people suffer mentally or even worse commit suicide because they can’t afford mental healthcare.
I know I take on many different projects but this one is more than just a project to me, It is personal!!! I have dealt with mental health issues due to my physical health. I personally see a counselor and it has meant so much to me. I really wouldn’t be here if I didn’t see one!
Just so you know I am not looking for sympathy in any way at all! I write this so people can understand my fight as well as know we can still move forward even when things don’t go your way!!
I want to thank all of you that support me in all of my endeavors and with my health.
I want to say I Love You Diana Small-Rivera for being my support and being by my side through all of our tough times! You are my rock and my love! I also want to thank my daughter, Savannah, for her support and I Love You both so much!!
LAST BUT NOT LEAST THERE WAS THIS GREAT BASKETBALL COACH , JIMMY VALVANO, ONCE SAID” DON’T EVER GIVE UP! DON’T EVER GIVE UP!”I LOVE YOU ALL!