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Learning and trying to be kind and living my life as fully as I can stand it.

Friday, June 30, 2017

On the pred

4 am and the Prednisone has me up again. Mostly because I'm so hungry I could eat a wheel of Cowgirl Creamery triple creme cheese with bread or half a fruit and custard tart and those are just examples except no that's pretty much what I've eaten yesterday and today. In addition to a lot of incredible homemade Indian food a friend made for me and handfuls of cashews and pistachios and a chef salad and protein shakes and protein bars and not a lot of vegetables I see, partly because going grocery shopping has been beyond my abilities and partly because sometimes vegetables are beyond me. I have been drinking Arbonne Greens Balance to make up for that.

I like what I write here to be relatable and when I go into medical stuff it's probably not too relatable for most. I've spent the last almost 30 years of my life denying or trying to deny how much my medical conditions affect my daily life, how they don't make me different. But no. That's wrong.
Different than whom? Who knows. The normal. The measurement, made up in our own minds that represents what we all should be, based on comparing our insides to other peoples' outsides and coming up with something that isn't real.

Prednisone. I'm flying high on it again. Not for the first time and probably not for the last, I have this super power surging through my body and my mind like a blow torch. It's intense. I feel like I could do anything, solve any problem. I see connections in my mind's eye, between people or ideas or situations. It takes everything to the nth degree. Makes it hard to sleep. Makes me want to write buckets about twelve different ideas at a time except it's even harder than usual to get butt in seat and ask the words to come out. It feels like anxiety. Jitters. Being on speed, though I've never been on speed. I have to take my own hand and lead myself to a quiet spot to say, shhhh. Rest. This is not real. Your body needs a nap, a break, glasses of cool water. Try to go back to sleep.

The other confusing thing about the pred is that for the most part it feels like how I should feel. Like how normal people feel, if there are normal people. I have energy. I can do things like clean the kitchen without sapping all other available energy reserves. I am a better parent. I have good ideas and follow-through. So then I have a hard time trusting what is real. How I'm supposed to feel. What is my baseline?

I've been very open with the people in my life that I'm taking a lot of steroids right now, mostly because it is so front and center in how I feel. I became aware that I'm talking faster than usual or zipping around the room, or that I've said something with greater intensity than necessary (although that may just be my style) I'm roided out. That's what's happening. So I tell people, give them a warning or an explanation. Like calling Stephanie yesterday and telling her "I have five or six different things to talk to you about that are of varying degrees of importance and some are intense. We don't need to talk now but I want you to know they're on my mind." Phew.

A few people have said to me "You make it sound kinda good!" and I get that. I mean, it is kinda good. I feel super. Literally. I feel positive about things, I'm getting a lot done, I'm writing. I've held some yoga poses that I usually can't do. The clarity is my favorite part. That's the part I want to keep forever, even though I know I can't. It will go away too.

Here is a funny, weird, sad story. When I turned 40 this past March I went out to dinner with my family of origin--my mom, dad, sister and brother. This was a rare thing--the last time we did it was several years ago right before my brother went to Ghana for the Peace Corps. My parents are divorced and though they're far beyond civil with one another and we are regularly together for larger family events with the grand kids, we haven't been a five-person unit for decades. But when I hit this milestone birthday and thought about what my heart truly wanted, what it wanted was to sit around a table and share food with the people who made me. We had a wonderful dinner, complete with funny and frustrating patterns that have been in place since Martha, Ira and I were kids. We had deep discussions, which is one of the things we love to do.

At one point I mentioned that I'd thrown the last of my Prednisone away, flushed it down the toilet actually. I know, that's bad. And that's part of the point. The four of them were equally aghast when I said that. "No! You can't do that! That's terrible! So bad for the water and the fish and. . . "

I was embarrassed but got over it. And I promise I won't flush meds again. I wasn't thinking about the water when I did it, I was thinking I didn't want my kids to find the pill bottle and somehow get into it and take the remaining ten pills. It was note-worthy to me that I'd finally gotten to toss them because I'd been taking from a lot to a little of the steroid daily for four years for my colitis. The last time I was on a ton was after being hospitalized in September 2015 (you can scroll back and find that I was writing a lot at that time too). I finally weaned off sometime in 2016 but I held on to the bottle, just in case. Just in case I flared and I need immediate relief. Just in case. So it felt good, even a bit momentous, to toss it.

A couple days after our dinner I realized something. My family was truly horrified that I'd put those pills into the sewer system, into the waters of the world. But my own body is just full of this stuff. So many meds. Handfuls for years. Taken without much thought, without much noticeable side effect. It made me feel kinda sad.

This essay is rough but I"m posting it anyway. It makes me feel twitchy to write too much about health stuff so this will be the last of it for a while. Going to try to go back to sleep for another hour or two.

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