Wednesday, June 20, 2012
The past few days since my dad left have been awful. The gastrointestinal stuff is at its worse, and I fear I am going to have to pick up a prescription for the dreaded shot (developed for opiate users, it works real fast in getting things flushed out). NOTHING works anymore. I lay around all day with hot packs on my belly, slurping Miralax. Not what I envisioned for myself when I was a kid. If I had, I wouldn’t be here to tell the tale! Keep reading, it gets better.
The good news is, I had my first three hours with the person who will be helping me and she’s a lovely young woman who seems filled with joy and a willingness to make my life easier. I feel very, very fortunate to a) finally admit I needed the help and b) qualifying for it (though I felt like Dorothy from the Wizard of Oz, going back for the broom five times to meet their requirements). But it worked out, that’s the main thing.
We must be grateful for what we have and for what we don’t have, too. This is a lesson I must keep learning. Practicing gratefulness. You never really get what that means until the challenges come rolling in and the whining starts. And there is a lot to whine about in this world right now. But we must resist the urge to complain and look around and what we do have. For me, it’s a roof over my head, food in my belly (okay, it doesn’t move out, but you know what I mean) and access to medical care not to mention good friends and family.
And we must be ever aware of what works and what doesn’t when negotiating the bumps in the rode. There was this article in Huffington Post yesterday about a guy called “Bubble Man” in Indonesia who has NF. I knew by the picture he had it without reading the article, but I did anyway. They still refer it to the “Elephant Man” disease and that really ticks me off. Firstly, he had Proteus syndrome (though someone who commented wrote that that was unclear) which was changed in the Library of Congress in ’95, and secondly, it’s insulting. I wish he had an email address. I’d send him “Bumps of Beauty” though he might not read English.
While I was lying down (as always) yesterday, trying to get my bowels to move (out damn spot!!) I started thinking about how horrible the pain was at my sister’s get together Saturday and what makes the pain ratchet up and came up with a list. My sister hasn’t called me since that day. I think she might be mad at me for attempting to come and taking Ben away from the festivities. He assured me he would rather have been just with me, but who knows. It couldn’t be helped. Anyway, I came up with a list. Make your own lists of what makes you unhappy or whatever, and what makes it better. It helps.
Things that make my pain and pulse ratchet up
Lack of Sleep
Pressure on Spine (from constipation, tumors)
Feeling left out
Unable to hear well, especially with ambient noise around me
Paying attention to it
Staying away from the Abyss
Staying away from the News
Posted by Sherri at 8:34 AM