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.

Author: fjr311

Frank Rivera- Founder/President- Sarcoidosis of Long Island Founder/President- RareNY 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 to raise awareness for Sarcoidosis in the government sector. He has also spoke at two Congressional briefings for Sarcoidosis. Frank is a National Ambassador for Foundation for Sarcoidosis Patient Ambassador for Illumina Frank organized RareNY in 2016, to raise awareness for Rare Diseases in New York. He organized “A Day for Rare Diseases” in October 2016 in New York with Global Genes. The event raised awareness for all 7000+ rare diseases to the public.

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