I pumped my gas and drove off without putting on the cap or shutting the door.
I guess I was distracted.
It happens to the best of us, right?
I feel like I'm coping well, but then little signs like this pop up.
I start getting irritated with my hair. I can never get it right. I pull at my face wishing it was back to it's normal size. I change outfits. I change medications regimens all in an effort to fix whatever is wrong.
Because something is wrong. Something is very wrong. I just don't want to pinpoint what.
It's amazing that even after four years I resort to denial as a defense mechanism.
I put on a happy face. Everything is okay.
But I am bothered.
It's starting to creep into my personality.
I'm having trouble making jokes. I'm having trouble laughing. Concentrating. Thinking.
Maybe if I just get it all out.
First, my Dad's update is from his view. There are a couple inconsistencies.
I am not oxygen dependent.
Oxygen is the only proven therapy to assist in improving lung function. Evenif I am just improving my PaO2 levels from 96% to 100% there is a benefit in hopefully preventing further lung fibrosis.
It also makes me feel better.
I wear oxygen at home because I like it, not because I'm hiding it.
So, there, Dad.
I am still able to drive myself and get around independently. I relish my independence. I have not had a lot of offers to drive, and I really hate to ask.
I can say I'm generally happy with the state of my lungs and am praying that the photopheresis will work in preserving them.
I'm praying for another miracle.
I'm praying to be restored to health.
I don't like my doctor, etc. calling my choice voodoo. I don't like my central line, AT ALL. I don't like the pain and the amount of pain management I have to take. I don't like that nobody wants to take away my pain management because that means there is no end to the pain in sight.