Living as a Rare Disease Patient and Advocate During COVID-19 and The Protests

So here I am sitting in my basement looking back at the year 2020 and saying WOW! Who would of expected what has happened in the past six months. I sure wasn’t ready physically and mentally.

So I know we all have been dealing with so much stress. I understand and I am here for you!

I am, as you all are, been trying to deal with this pandemic and now with the yet again terrible treatment of people of color by police officers and by others. As I am an advocate for rare diseases, especially Sarcoidosis, I am an advocate for equal rights. I will write my full feelings on this issue at another date.

So when January started there was so much hope, not only personal hope but also hope as an advocate. We had so many plans and we also did many live meetings with government officials. Even in February, I went to the FSR Advocacy training in Washington DC. It was so great to see so many other Sarcoidosis Advocates, but I would rather say that they are friends. It was great talking and passing on what each other is doing and what they had planned.

Then everything broke down and quickly.

The pandemic hit and it hit hard. I live in the hardest hit state in the country, New York. With NY being so population dense it was so easy for transfer of COVID-19. So as soon as I heard about how hard we were being hit I self quarantined.Even before we were mandatory! But unfortunately, I to this day don’t know how, I started getting sick. It started with a sore throat, trouble breathing, then stomach issues (even more than my usual problems), then I was getting chills, rash came, headaches, but the worse was a fever. I don’t get fevers, my normal temperature is around 96, so when I had a fever I knew I was in trouble.

So yes I had COVID. My doctors put me on antibiotics right away. I was even quarantined from my family. I was stuck in bed in our room with family bringing up my meals and I had a bathroom connected to the room. My wife had to sleep seperately from me for 4-5 weeks if not longer.

Things were very rough for me for awhile. My breathing became very heavy and it was hard to breathe. With Sarcoidosis in the lungs it is already hard to breathe, but I can honestly say that having COVID was one of the worse things I had to endure ever. I know that people will say, are you kidding? No I am not kidding at all. I was lucky that I didn’t have to go to the hospital, although at times some of my doctors were recommending me to go. I was told by other doctors that if I went to the hospital in New York it would be a death sentence. Imagine that?? Going to the hospital is a death sentence?? Can you imagine hearing that?? Well there became a time where my breathing was so struggling that I can honestly say I wished that death would take me. It got so bad my wife had to come into our room and stay with me overnight to make sure I kept sleeping and most importantly I was breathing. As much as it was stressful to me,it was extremely stressful to my family. They had no control or any answers on how to help me. I remember on making a decision on whether or not to go to the hospital. I remember seeing the sadness and horror on my wife’s face anytime the hospital was brought up. The thought of never being able to see me again was so hard on my wife and daughter. It was weighing on me also. I was wondering if I would wake up in the morning and that was every morning while I had this virus.

It took me another 5 or 6 weeks to get rid of all of my symptoms. It was real tough. Like I have said many times, I wouldn’t wish getting COVID on anyone. I have been through 9 surgeries, Sarcoidosis, IBS, Sjogren’s, and Parkinson’s. I have been deemed terminally ill, but I have never felt so bad except when I had diverticulitis, a hole in my colon and sepsis all at once in 2012, which so happens to be the last time I had a fever.

So here we are in June, I still have a burning feeling in my lungs. It really hurts. My pulmonary doctor believes as do some of my other doctors that I have permanent damage in my lungs and possibly other parts of my body. All I have to say that COVID is the gift that keeps giving. Thank you COVID!!! NOT!!!

Life has been strange. I have only been out in my backyard to get some sun since mid March. I have only been in the car one time since end of March. All of my doctor appointments have been teleconferenced. Life has been changed so drastically and probably will be for life.

If anyone would of told me that we would be in a stay in for going on 4 months I would of though you were crazy. Just think about it this way, at least having a chronic rare disease helps you deal with this quarantine/ stay in better than someone who is healthy and hasn’t had to stay in for any period of time. We can adapt better as chronic patients because we at some point or another have had to stay indoors, of course some of us more than others.

How have I been handling this quarantine/stay at home requests?

Well I have to say it hasn’t always been easy. If you know me I am very outgoing, even though I am on disability and am home a lot of the time for over 5 years. I do get anxiety and depression. But I was always able to go out to get that personal contact. But now not at all! This has been the hardest thing to get use to. I love reaching out to patients and caregivers face to face more than online or by phone call. I am learning and adapting to to this each and everyday.

One thing that has helped me is having our Sarcoidosis (Virtual) Online Support Group Meeting. That has been a Godsend to me. It has helped not just everyone else,but me very much so.

Now what we thought was going to be the start of reopening in phases, may be sidelined. All of a sudden we get the Protests for the unlawful killings of people of color. This has been a very tough part of life that we all have to deal with, whether you have different opinions on it or not it still raises anxiety or even depression. Now these protests have consequences, with COVID still very active in the United States and people protesting we could or probably will have spike in the COVID cases so that also will also raise so many more concerns.

Just a little about the protests from my point For me what is going on with the police and with people of color is such a travesty. I also think we as a country need to hear but more importantly really listen and act on it. The time is now to do something. Okay enough on that.

These past couple of months have been hard on so many people. I am no exception to this!

I have fought real hard to beat COVID both physically and so hard mentally. To think you could die at anytime due to being terminally ill, then having to face COVID head on took a lot out of me.

I didn’t even post about it because I couldn’t deal with people texting, messaging me or calling me at the time. My whole focus was to get better. That was and is priority number one!

One thing I do want to say. It really made me angry and sometime even made me cry!

To all of you conspiracy theorist.

This Virus is real! To you that think this is fake or overblown come talk to me! Let me explain this virus to you. This virus systematically attacks your whole body. While it does this it still attacks the areas that were already attacked. To you who compare it to the flu, you really need to educate yourself! All I can say is that if we don’t open the right way or if we don’t protest the right way, (social distancing and masks and gloves), we could see this kick right back up!

So we are here in our new normal! What does that mean? It is very simple! It is something I am not new with! We adjust, we fight, we move forward and most of all we love each other, each one of us!

Be happy you are living!! Live smart!!

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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