Readjusting my brain 8.29.19

Readjusting my brain 8.29.19

I need to write my letter to the facility I’m staying at next week. I thought I’d write it here because then I’ll get it DONE. I’m feeling a little overwhelmed at the idea of going out of town on my own. It’s very intimidating! How weird is that?

For my 10 readers (I’ve bumped myself up to 10) who don’t know my background all that well: I used to travel on my own all over the world! I absolutely love it. I totally get that people who prefer company don’t understand this. But I really enjoy my own company - when I’m in a decent mood, of course, then like anyone else, I can get sick of my own company quite easily too - and I really enjoy meeting people from all over. I also love traveling with other people too. However, it’s got to be a good fit…or…well, I don’t need to explain that, right?

I know that traveling on my own is a very limited thing these days. I may never get to do this again. I’m aware of this. I’m always aware that the hug I’m giving someone may be my last. I’m aware of the last trip I take with the kids may be the last. I live that way. It’s just the way it goes in a medically fragile body that has so much cancer risk.

I’ve weighed the pros and cons and feel that this trip is super important for my mental health. I’ve been going to this place for nearly 30 years. I discovered it in a very magical way, a story complete with does in the meadow, rides from strangers, sunrises and all kinds of beauty.

It’s changed owners over the years

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I had lame doctor appointment 5.1.19

I had lame doctor appointment 5.1.19

I love when patients help other patients.

I remember going to a nutrition talk when I was around 19 years old after living with the inflammatory bowel disease for around two years. I can still see the speaker in my mind’s eye - how does long-term memory work? I’m so fascinated with neurology.

She was very young and told us to drink Ensure who had clearly sponsored the event. This must have been around 1991, before the Internet. So the room was PACKED with people with IBD and their loved ones. As people started asking questions, the rookie speaker looked visibly unprepared for the onslaught of nutrition questions.

After a few awkward minutes, other people in the room started answering each other’s questions. I was so young and the experience was so profound that it seared in my memory.

Hmmmm…it’s often the GI patients that know more than the practitioners.

Fast forward to this post I shared above. I’ve never tried having them

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My PICC line is annoying 4.20.19

My PICC line is annoying 4.20.19

Some days I don’t feel like writing in here.

Today is one of them.

But I like the challenge of writing every day and I think my writing has gotten a tiny bit tighter since the first few weeks I started here. It’s been pretty bad so that’s not saying much! I need more time to edit them - but with my health the way it is, I’m not sure I have the bandwidth for a lot of necessary editing. I can’t care about that. It feels so good though to share more of my story in a place that will allow me to live on no matter what happens to me!

The other part of my story from Thursday night is that my PICC line bandage popped open right before I left for the ballet.

Since this is it’s own post, I chose not to include it in yesterday’s story.

Every day, there’s so much going on! My head is spinning. My dad is so weak right now - it’s so hard to see him like this but that again, deserves it’s own post. I’m still processing everything that is happening with him.

Back to the bandage.

A PICC line

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Traveling is so hard now 4.11.19

Traveling is so hard now 4.11.19

I never knew hunger before. Compared to what so many people around the world experience, I probably still don’t truly know hunger.

Most of the people in the worlds I’ve walked through don’t know hunger either.

All I know now is that hunger is something I live with on a daily basis. I wish I could explain what it’s like to be surrounded by so many people with SO much, while so much of my life gets stripped away.

While I sit in hunger while so many eat around me. While my belly rumbles and my mind gets fuzzy.

How do people do it? Live with hunger when it’s not even for a medical reason?

But simply because others are greedy?

The days of indulgence are ending. I’ve tried to warn my food friends that fancy food is out. I hope they can pivot fast enough to keep up with the zeitgeist.

I had a good doctor appointment yesterday but damn it’s still exhausting. I keep trying to figure out ways to get nutrients

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