Even on good days, I still have a trach.
Even on good days, I still can't go most places alone with Jacob.
What irritates me the most (well....mostly the most) is that it is so INCONSISTENT! Like right now....I don't feel too bad, I got plenty of sleep, but my eyes are starting to go already. What the...? I. Don't. Get. It. Other times, I'm so weak I can barely walk, and my eyes are fine.
Sometimes I crash after being way too busy.
Sometimes I just crash. And it drives me crazy. I like predictable. Oh, do I like predictable!!
I used to block out a time in my planner to be spontaneous. (ar ar) I am NOT a spontaneous, fly-by-the-seat-of-your-pants girl by nature. But I have had to come to become one by circumstance. And I resent that.
I resent having my life completely altered by no fault of my own. I resent not being able to do what I want with my son. I resent not being able to choose how many children I want to have. I resent not being able to work part time if I wanted to. I resent not being independent.
I resent having a hole in my neck.
However....
I love my husband.
I love my son.
I love my home and the land we live on.
I love my God and all He has done for me.
I love my family.
I love my friends.
I love the friends I have made only by having this disease.
I love that I love more deeply, more quickly, and forgive more easily.
Sure, I've been knocked down. But I. Have. Not. Been. Knocked. OUT.
2 comments:
I am sorry you have this. Hopefully you will get through it and feel better soon. I think you have a good attitude despite everything.
Oh this speaks so true for what we go through and what we need to remember to be thankful for. I was just calling myself a fool for the fact that every 14 days or so (after my IVIG) I feel pretty good and question...a remission??? And then a few hours later..ptosis, stumble, slur...ARGH!!! Lots 'O Love and Prayers!
Jen
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