You Never Know What is Going On With Someone

(Unless They Want You To Know)

I want to start this by saying I am not looking for anyone to feel sorry for me or anyone else for that matter. What I really want is for people to understand that you truly don’t know what is going on with people if you don’t ask or if they don’t want to bother you.

Life has a way to throw things at you when you think it can’t throw anymore on your shoulders. But then I realized some things I ended up causing myself.

This is about my health issues that have been starting to creep up and say, “Surprise I am Here!!”

Not that I forgot about them, well maybe I did…

At the end of October 2022, I had a big scare. When I say big scare I mean a really big scare.

On October 27, 2022, I passed out and fell down my steps inside my house. I was at the top of my stairs and passed out and fell 10 steps. I had fractured ribs, a bump on my head, but the worst was nobody was home, and I was still passed out when I got to the bottom of the stairs.

I woke up to my two dogs licking my face. I thank God that they were at least here. I ended up going to the hospital by ambulance. I figured I would be better and be home that night.

Boy was I wrong!

I got to the ER and was tested and scanned for everything. Well, I thought everything. They decided to keep me overnight. Then the days became one after another. They decided that I had complications from, not Sarcoidosis, but from Parkinson’s. My Parkinson’s has gotten worse, not in the normal sense of tremors, but in the sense of my brain is giving my body signals that the rest of my body isn’t receiving, due to the Parkinson’s.

Life has a way of humbling you. Sometimes you think you can do everything and then BAM! Life brings you back down. Sometimes you need it, sometimes you don’t. But it is not for me or us to decide.

I stayed in the hospital for 8 days and then went to a rehab facility for 6 weeks. It seems like a long time for a fall, but it wasn’t just a fall.

You see as many of you know I have a rare disease called Sarcoidosis. But not everyone knows I also have other different conditions. I usually talk about the Sarcoidosis more than any other because that has been the most prevalent to my health decline, but because of that I had this tendency to forget about the other diseases. Well, one of those other diseases is Parkinson’s.

Let me tell you from experience, don’t forget that your total health is important. If you concentrate on one aspect you end up neglecting the other aspects of your health and they like to stop by and say, “Hey I am here. Don’t forget about me!” The worse part about that is I had signs that my Parkinson’s was starting to act up, but I ignored those signs.

So yes, I talk and advocate about self-care. Yes, I advocate taking care of yourself first. Yes, I show I am strong. But remember I am only a person. I am someone who loves, who makes mistakes, who pushes too hard, who stresses too hard, and someone who sometimes, well maybe too much, doesn’t practice what I preach. So, when my health comes knocking and I don’t listen things like this happen.

Back to what you don’t know. My body gave out due to so many factors in life. My body wasn’t receiving the proper signals and I didn’t even know it. Unfortunately, sometimes you don’t know what is going on until it is too late. I won’t say it was too late for me, but I am still in the process of figuring it all out. My body was on autopilot. So, I thought.

Parkinson’s is a complex and sneaky disease. I was diagnosed with Parkinson’s in 2016 but had symptoms since 2012. I was told I had essential tremors. But the tremors got considerably worse as the years went on until I had trouble holding onto things. My left side of my body is worse than my right especially the tremors. Always has been and still is. But the things I didn’t talk about are the memory problems, the delusions, however small, were growing. I haven’t talked about these things because I didn’t want to show weakness and they weren’t taking over my life. They were signs that my Parkinson’s was getting worse slowly but surely. I just didn’t want to admit it. I also thought my Parkinson’s was doing well because my tremors were doing well with the medication. Being naïve isn’t an excuse at all. Especially for a health advocate.

Yes, I hold myself to a higher standard. Is it right? Probably not, but it is who I am. When I saw signs of my health changing instead of attacking it head on, I put it away. At times as a person or advocate, we get to believe that we are above our diagnoses. When I say we I mean me. When I start to feel different things and I want to get things done I put my health on the back burner.

Like I said earlier, this in no sense is for anyone to feel bad for me or for things that happened in my life I didn’t have culpability. I think it is the opposite. I hold myself to blame for my declining health. I hold myself responsible for my actions. I let my health go. I let my life go without fighting for it. No excuses, just the truth.

So now it is six to seven months later and here I am. I learned a very hard lesson about my body. Listen to it. I am only as good as it is. When I talk about my body that includes my mental health as well. If I have different or delusional thoughts except it. It is part of my diagnosis of Parkinson’s. If my body is hurting or in some cases not feeling anything, I need to respect what my body tells me.

So, now I am still trying to figure out what is going on with my body. I have one doctor saying this happened due to my Parkinson’s and other doctors saying they believe I had a mini stoke. I have tests telling me nothing. All I do know is that the left side of my body is getting weaker, and I am losing feeling on that side as well. I can pinch the left side of my body and I barely feel anything. I have pinched it so hard that I have left bruises and still don’t feel anything. My left leg at times drags as well. I still have memory issues and have weird things going on like seeing things that aren’t there. On a good note, though, is my drive has come back. I know I must take things slow, but I am able to do advocating again. I am so happy I can do one of the things I love. I have decided to take things slow and say no to things I can’t do anymore. I also have decided to not stress and “have to” do things on my own. I put have to in quotes because I talked myself into that mentality.

Now I work with others to help the communities that we serve. I feel a lot less stressed but with the emphasis still on helping others with not having to have my whole life advocating. I am much happier now and loving my advocating and my life balance. I don’t feel that I must prove myself and let everyone know exactly what I am doing. I am actually doing what I want and feel needs to be done, not for me but for the patient and caregiver community. I can’t worry about what others say about me either. I just have to be able to look at myself and know why I am doing what I am doing and that has to be good enough.

I am still not happy with where my body and mind are right now. Not having answers is rough. Mentally I have good days and bad days. I try to learn from both, even if they don’t make sense. I don’t want to go back to old me. I want to keep learning and become the new me. Embrace whatever that is. I am not totally there yet. I don’t know if I will ever be in the perfect place mentally and physically. But I will embrace the new me. That is all I can do!


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.

One thought on “You Never Know What is Going On With Someone”

  1. Nice one!.
    This is what I love in your post
    This is a powerful reminder to take care of our whole selves, both physically and mentally. Thank you for sharing your story and advocating for self-care.

    Liked by 1 person

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