Another Bump in the Road! Looking for Suggestions??

As a rare disease patient Sarcoidosis, and Sjogren’s  with a not so rare disease called Parkinson’s, I deal with new symptoms everyday. My days are always filled with excitement.

Well on Monday I had a major setback in my road to “recovery.” I woke up in a very good mood on Monday then after finishing breakfast I tripped over my dog, which shouldn’t be no big thing. 

Here is the thing with that. I have terrible balance to begin with, so I tried to stop myself from falling which probably made it worse and somewhat better. I was somewhat lucky that fell through a doorway. Only my right elbow and my left ankle hit the walls. Then I twisted my right knee and my left hip hit the ground.

Ever been in a fall where you feel like everything is going in slow motion? Well that is exactly how I felt when I was falling.  I am realizing now what being terminally really means. 

What is means to me?

To me it means every thing I do, any step I take, Every bad feeling I have has consequences! I am trying to understand this in my mind. Of course this is a new frontier and not many people can help me with this. 

One thing I found out though is I seem to do most of my writing when my mind is in a fog. Is that weird? I don’t know why this is but I do this most of the time. So in advance I am so sorry if any of this doesn’t make sense. 

I have been realizing how life is fragile! Things that you take advantage of in life are so much more difficult to do now.  Walking down stairs, getting dressed, taking showers ( I use a shower seat), walking with a cane (told by my doctor I need a better one, a 4 point cane) even getting out of bed is always fun! No I am not complaining! I am just describing my daily life. It is different and something I am trying to adjust to. 

But the worse part of adjusting to my declining health is the brain problems. The lost of memory, the lost of vision, the brain-fogs that come and go. I have the most problem with that. I have not taken pain pills because I wanted my mind clear. No I can’t even control what I am doing and thinking at times. 

I have always been one to pride myself to be in control of my mind, so I have to say when I get this way I kind of freak out. Which I am sure it makes things work. But I can’t figure out how to stop this feeling. 

My meditation has helped but these fog days can last all day. So I just hold on and hope to make it through this day. 

I know that being terminal isn’t good, but I don’t want it to run all of my life!

What are some of the things that you do??? I am always up for suggestions, legal or harmless of course. 

Not all of these blogs are just for information, they are some just for help to me or anyone else going through this!

Please help!!! 

I have two mottos:

  1. I have Sarcoidosis, but it doesn’t have me!

  2. Terminal is just a word, not a death sentence!

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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