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Now What???

In 2009 I was told I would die before they figured out what was wrong with me. 2018 they told me Im lucky to still be here cause this disease should have been taken me out.
I realized something over the weekend.I may not have the quality of life I'm accustomed to. But I'm still here.
I cried because I wasted time I will never get back. I cried because I have to face reality that I may not be the last one on earth to turn the lights off...
Then I had a epiphany.


If you know the storm is coming, you prepare, Do what you can while you can. Yesterday I also realized this, I'm not going to fight for you. I gotta fight to live for myself. And when when this cross gets unbearable and I can't carry it anymore,I need people in my life to be at peace and let me go.
Nothing is more exhausting on a person who has an incurable disease than to fight for themselves and the people they love.

Friday afternoon I had a visit with pain management.During this visit I was informed that there was nothing they could do to help me. I was told that the opiates would wad cause a respiratory issue that would result in death. So I asked was I suppose to live in pain for the rest of my life. The seizure medicine should help. Ha, it doesn't!! I explained how I felt like no one wanted to be the bearer of bad news. And I was right! The surgeon basically told this doctor, it's too risky and our hospital is not equipped to do this procedure, He also said he was not comfortable doing it.
After hearing that and some other information I asked how long would it be before I was wheelchair bound. He said everyone is different.Then he went on to say,"The fact that you are still alive is nothing short of a miracle.And the fact that you are able to move is a blessing". The first disease kills the central nervous system at high speed. The second disease does it a lil slower. They are both the umbrella to MS. Now the neurologist and I have to discuss medication option. Am I a candidate for the meds used to slow it down or has that window closed,
However the cards fall, I'm not going to let it beat me too bad. I got some more adventures left in me!

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