My Sarcoidosis thoughts as I live and move forward with this disease.

In hospital with one of my major surgeries!

As 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 aren’t associated but masked looking like many other diseases. Sarcoidosis is classified as an auto immune disease, though it takes on many other disease 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 Sarcokdosis 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 acknowledgement that this disease needs and 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-Rray 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 to help others anyway legal. 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 fundraising. 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 cn 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 that every pain means something new is going on and is related to your original diagnosis. Sometimes it is what it is. Learn your body!! Know its quirks, pains, aches, instabilities.

 

LAST BUT NOT LEAST THERE WAS THIS GREAT BASKETBALL COACH , JIMMY VALVANO, ONCE SAID” DON’T EVER GIVE UP! DON’T EVER GIVE UP!”

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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! 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 that you are!!

 

I LOVE YOU ALL!

FRANK RIVERA

frank@sarcoidosisofli.com

631-522-8824