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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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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I got some baby medicine 4.9.19

I got some baby medicine 4.9.19

I wish I could convey in mere words how wonderful it is to have friends - and new peeps who become friends! - drive me to my appointments. I was very tired today and grateful for the pick-up!

AND, and and, I got to see an old friend and her new baby that is the cutest snuggle bug! I love holding babies and having them sleep on me. Like I said in a previous post, I’m totally good with how my life ended up (IN THAT AREA at least), but it’s so fun to visit with other people’s little bebes! It felt like such a treat to hold him, visit with my friend and get my IV bag.

I ended up feeling sick afterward - I think the glutathione made me woozy. I’m not feeling great today. I’ve been having a lot of pain the last few days. What’s more worrisome is that the pain is in new areas of my stomach. Usually, most of my issues are on the left side where the attachment between large and small intestine is (I have a itty bitty part of colon left). But this new pain on the right side? I don’t know. It’s definitely not good.

I’m also having pain while just sitting around. It took me a LONG time to come up with my current system of IV fluids, walking, stretching, yoga, tea and broth in order to reduce pain. The fact that there is NEW pain even when I’m doing most of my routine - I only did a little bit yesterday so that could be part of the problem for today at least - is very troubling. I’m running out of tricks.

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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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I went to the dentist 4.3.19

I went to the dentist 4.3.19

It happened.

I knew it was coming. I ran into an old friend - we’ve known each other so long I can’t remember when we met, adolescence - and I didn’t get the “you look good.”

Granted, as soon as she said “Julie!” I fell into her arms like a kid. I just feel so safe with her, and I do things like that now, not necessarily socially acceptable “normal” things.

I chatted with her for a few minutes and felt so happy I got to see her and her lovely husband and kid.

They said nothing about my outside which is unusual these days.

When I got home, I looked in the mirror and realized that my hips are gone. I mean, they are still there! But not the way they’ve been for most of my adult life. I’ve always had hips! My frame is noticeable different.

This is a tough one for me to talk about because so many people struggle with body image issues and consider weight loss a “good” thing.

But for me? Shrinking is not the goal!

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Have I lost eggs? 3.12.19

Have I lost eggs? 3.12.19

I don’t know if I can find the words to share my terror. I keep thinking about people who are told they only have a matter of months left. I think about what that would REALLY feel like. For the first time ever, I can step into that fear and see it from that perspective. When I empathize or try to understand someone’s position, I try to actually shift into the perspective of their world. I can’t always do it. Sometimes my emotions get in the way of trying to feel what THEY would be feeling.

I’ve never been this scared before. Ever.

I can’t lose eggs. I know I can get them in me still. But they used to be safer than they are now. What is going on inside of me?!?!?!?!?!?? What the FUCK? And why is it taking so damn long

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I got cancer screening 3.6.19

I got cancer screening 3.6.19

I can see why I need to write here every day. I have at least three blog posts from today alone. I had an ovarian cancer screening check today at UW. It was my 5 year check! Because my blood levels of CA-125 were never raised when I had cancer, there is no point in checking them.

I did realized today after meeting with the doctor that no one has been checking my blood for any sort of tumor markers or other things that could indicate cancer is growing somewhere. Geezus. Yet another thing to add to the list of things I need to keep track of. Thankfully, my doctor is amazing and SHE thought to ask the questions that are part of HER job. Instead of me feeling like I constantly have to remember so many details. For example, my doctor’s office in California - last I checked - haven’t sent my labs to my other doc in Seattle despite me asking both offices. So now I have to waste energy following up with both. That’s a drop in the bucket compared to what I have to accomplish in a day.

So you’re probably wondering how my cancer screening turned out! Or maybe you’re not? Since I never had raised CA-125, all they do is give me a pelvic exam. I got the tushie checked too today! Which isn’t always possible if I’m feeling sore. She said she was glad she can check because

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I left my cocoon! 3.4.19

 I left my cocoon! 3.4.19

I made it to my improv class last night (on 3.9) which was an amazing feeling. I actually had some energy and felt like myself which was a lovely surprise. I’ve been super sleepy at the other classes I managed to attend (I’ve missed two out of the eight unfortunately). I’ve been so low energy now for several weeks due to little food. Also, when I’m partially blocked in my intestines, I am extra tired. I’m at the point now where anything social or “fun,” sounds hard and nearly impossible. I get scared that I’m going to be “living just to live” as Claire Wineland expressed before her death. I also feel like that’s not a life worth living. I need to experience SOME of the world - I just have to be so so careful about how and when I leave my cocoon now…..

I laid in bed as much as I could in anticipation of the class. But I had so many phone calls to make to doctors that I did use up a lot of energy doing that.

I also had a call yesterday with an organization my friend, Jenn connected me to that is reviewing whether or not I’m eligible for more benefits from the state. Jenn and I met through mutual food friends - she works in food insecurity (while I worked in food education). Her knowledge in this area has been super helpful. She is concerned that I’m only receiving

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I am hungry 2.27.19


2/27/19 Tired and hungry

Today I had a doctor appointment at 2pm. When I have a doctor appointment, I rarely eat beforehand. Which seems like a bad idea, looking from the outside in. But if I eat at the wrong time, then I’m stuck in the bathroom, or running back and forth, for a couple of hours. Unless I am traveling, I will rarely get out of bed the requisite two to three hours ahead of departure time in order to eat broth and eggs. Plus, I have so little I can eat, if I eat too early in the day, then I will want more later in the day. I’ve never been super hungry the first half of the day - my brain, appetite and body have always been on a night owl schedule - but now, it’s worse than ever.

After my disastrous appointment today where the doctor lied to my face so badly - I’ve never seen a grown man literally squirming in his seat like this guy. I keep being told that they won’t order labs - I cried for awhile in my car. Then called Megan. Then got a couple of doughnuts so I could eat the frosting off. This used to be a once in awhile thing. But lately…it’s not good how often I do this instead of real food. What am I supposed to do? I’m starving so much of the time and there is only so many juices and broths that cut the edge. This horribly sugary “snack” can’t be good for cancer prevention. But I’m so tired. So on edge. Overwhelmed. Tired. Did I say tired? Yeah, my estrogen is so low and I’ve eaten so little for 2 weeks that my brain isn’t thinking so sharp today.

I’m kind of forcing myself to write here. If I don’t do something like this - keep something like this tethering me to the real world and do a tangible task that I can successfully complete - I think I’m going to really lose my mind.

Yesterday when I got home from another appointment my mom reminded me that I had called her and cried earlier that day. I had no memory of it. Well, it was a fuzzy memory. Kind of like a drunken night from a few weeks ago that someone reminds you about. But I had no tangible feelings about the phone call. No idea what I said to her but do remember that I was crying while talking to her.

That’s not some unusual thing, of course, so my brain pulled up a memory of it. Who knows if it was the actual memory of yesterday’s call.

I know it’s scary to read this sort of thing. To watch some deteriorate before your eyes. Watch the system drag them under water, gasp as the person doesn’t come up for air for far too long, only to watch them burst through the surface, terror in their eyes, realizing that their chances of survival keep dropping.

I’m going to get some IV nutrients from ND which is quite expensive but luckily, I have far away donor willing to do it. We’ve never met in person! How amazing is that?

I will try to go get some real food in my stomach. It’s just so lovely to not be in pain, that I dread eating now. I know it’s so much work to get it out and a lot of pain in between, it’s gotten to the point where I connect eggs to pain now. I really, really can’t lose eggs. That will be very, very bad if I do.

Much love,