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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I am scared for TPN 4.14.19

I am scared for TPN 4.14.19

I don’t take a lot of photos when the pain is really bad. I also don’t like taking a lot of photos when my weight is down. It’s sunk down several times over the last couple of years but I managed to pull it back up.

The reason I took all those professional photos last year was because I liked my weight then and worried I wouldn’t be able to keep it there.

This could change when I’m on TPN (Total parenteral nutrition “is a method of feeding that bypasses the gastrointestinal tract. Fluids are given into a vein to provide most of the nutrients the body needs. The method is used when a person cannot or should not receive feedings or fluids by mouth.” - Google)

One of my registered dietitian friends - I have a lot of them because I’ve been in the field for so many years - has been recommending TPN for a long time because it bypasses the gut and gives nutrients entirely through the IV to the blood.

It has sounded terrifying for the past year or so when she has been advocating for it. The main risk is liver toxicity from long-term use. It could mean blowing out my PICC line more often as well. I’m sure there are other risks, but I don’t do a lot of medical research on the Internet anymore.

For two reasons:

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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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Food scares me 4.8.19

Food scares me 4.8.19

There was a guy eating French fries and drinking a milkshake near my friend and I while we got tea at Whole Foods yesterday. He did it so casually. There was another woman eating her salad while staring at her phone. I can’t help but stare.

I’m still thinking about their casual eating long after they probably have.

What is it like to not be able to eat hardly anything? I’m sure people wonder. I haven’t shared much about it mostly because it’s incredibly painful.

For anyone new to my life, I used to be a cooking teacher and nutrition educator. I spent years developing recipes, menus, and curriculum for adults and kids.

I used to spend all day thinking about food, buying it, preparing it, teaching it, and eating it.

Now? I spend all day thinking about the few foods I can eat and which ones I can get away with it.

The saddest part about all this is that I actually love healthy food.

I grew up in a mostly meat and potatoes household like most Americans in the 70s and 80s. My dad has always been a health-nut so we moved over to chicken and fish earlier than most. His parents - my grandparents - were into juicing. My Bubby, his mom and the woman we all got the Lynch Syndrome from (thanks Bubby!) made her own yogurt.

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