Just a Day in the life of A Rare Disease patient.

A couple of phrases you never want to hear:

We can’t figure out what is wrong with you.

There is nothing we can do for you.

This is the worse thing to hear:

Just Deal With It!

Well here it is President’s Day. Let us celebrate! Well for me it is another day of extreme pain with no answers in sight.

What did I do to celebrate the holiday? I have been in bed all day barely wanting to eat and drinking Gatorade so I don’t dehydrate anymore than I am.

Everyone says to me go to the hospital… go to the doctor… I have tried that. Nobody has an answer.

I was in the hospital 2 weeks ago for 4 days. What did they say? “We don’t know why you are dizzy, we don’t know why you are having TIAs.

So in other words you just have to deal with it.

What a way to live!

This is something many Rare Disease patients deal with.

I am sick, tired, and wondering what is next for me!

Yes it gets depressing! Everyday it is a new challenge.

But when does your body want to say enough is enough??

I am not sure when that is but I know mentally this is so draining which then affects your body even more.

I am writing this to let you know that I am trying! That is all I can do! I won’t say I am fighting! I am trying!

I don’t ask for pity! Never had never will! I am just writing this to show you that the lows are lows. The highs are highs.

I always put up a brave face, say I am doing fine! But guess what???

I am not fine!

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 Research, Global Genes Alliance Member, EveryLife Foundation Working Group Member and Long Island Liaison for Nord. 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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