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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I went to the ballet! 4.19.19

I went to the ballet! 4.19.19

OMG I had the best night!

Awhile back, I posted on Facebook that I was looking for ballet classes for adults. I can’t do jack shit musically but I can dance and I love it. LOVE it. In fact, I get so bored with my “Movement Routine” that I do in order to digest a few eggs that I’ve added more than just modern dance to it. (Imagine having to do several hours of movement JUST to digest one meal, that’s my life.) I like twirling around like a ballerina to mix things up.

Am I any good? Meh. I wouldn’t make a complete embarrassment out of myself but I’m certainly not gifted at it. There are so few opportunities for me to ENJOY this body, that even if I make an ass out of myself dancing around the house (sorry neighbors), I do not CARE. I’ve never been this limber in my life which makes it fun.

ANYWAY, back to my fun night. An old friend saw my post about looking for ballet classes - which are probably a pipe dream at this point, I can’t get through my improv class without

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I can't think straight 4.16.19

I can't think straight 4.16.19

I didn’t buy the beet infused yogurt shown in the photo. I don’t know why. It would be good to try to get the beet nutrients as well as the fat and protein in the yogurt in this body. I’ve decided, I’m going to get it next time I’m at this store.

It’s just that I have so much fear around food now! It’s so frustrating to feel this way after years of enjoying so much incredible food during my culinary career.

When I had the inflammatory bowel disease in my twenties, I also had a lot of fear around food. This is not a surprise! Pain will certainly cause aversion to foods. At this point in my life, if I even look at hot macaroni and cheese - my system has never done well with hot cheese and wheat long before the 2014 surgery - my stomach clenches.

It’s not easy for people newly diagnosed with inflammatory bowel disease to omit foods from their diet. But I always encourage them to give it a try. Often, they feel so much better off certain foods that they tell me they feel the same way when they think about eating something that causes pain. Not worth it.

There were so many things I could

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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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The long week is over 4.12.19

The long week is over 4.12.19

I’m definitely feeling better mentally than I have in awhile. We got best case scenario news about my dad - though he is far from out of the woods - which is a huge relief. I can’t think straight when I’m worried about him! It’s not just my dad that I’m worried about - also, he is a main caregiver and of course, we share the Lynch so if he is struggling…I can’t help but wonder: is that my future?

It’s nerve-wracking to live with a ticking time bomb buried in my DNA. People get so excited that I’ve made it five years since surgery. But the longer I go without another cancer, the more nervous I get. When will it happen again? What will it be? Will they catch it in time?

On top of that, not being able to eat much sends me down a more urgent anxiety spiral.

People wonder all the time how I handle all of this.

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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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Something is not right 4.2.19

Something is not right 4.2.19

The pain was bad last night. I hate when the pain is bad throughout the night. I wake up a lot and don’t sleep well. I tried eating four eggs yesterday and it did NOT go well. That’s the first time I’ve tried to eat four eggs at in one day since before Feb 15 or thereabouts. That’s when I left for San Diego.

I thought since because I had an extra visceral massage on Sunday that maybe I could get away with it. Also, I was hungry! I was super hungry yesterday which is always a good sign. Today, no appetite. Don’t want to put anything in my stomach. I should have done two bags of IV fluids yesterday - that would have helped - but I ran out of tubing and had only one left. I wanted to save it for TODAY’S visceral massage with Caroline. We discovered that if I give myself a bag while she works on my belly then she’s able to move my tissue more easily and open things up.

Visceral massage, if you’re wondering, is when specially trained massage therapists move the intestines around by massaging the belly and the back. It can be very subtle work - they are trained to know how to “pull apart” the intestines that are sticking together most often due

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I want a new job 4.1.19

I want a new job 4.1.19

It’s been rough times around here so I gave myself a week off from the Internet. Sharing content is both rewarding and draining. When people act superior because they aren’t on social media, I inwardly cringe now.

How lucky for you that you don’t depend on social media for support and company while being home-bound!

How lucky for you that you don’t depend on social media for life-saving advice and doctor referrals!

How lucky for you that you’re able to work in the real world and not desperately finding ways to generate income from your bedroom and bathroom!

The longer this continues, the further away the able-bodied world feels. And on top of that, I’m living in the bubble of all bubbles and then another bubble again.

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The struggle to eat 3.15.19

The struggle to eat 3.15.19

I made some headway this week on the medical hunt. Of course, there is still so much to do. I don’t know why I’m still so nervous to post my medical case publicly. There’s nothing in there that I haven’t already shared. I don’t know. Maybe it’s the same reason I haven’t told people I’ve been writing in here. I’m enjoying last moments of feeling private.

I used to be SUCH a private person! My goodness. I looked very friendly and outgoing - and I am - but I was sly about not really letting people SEE me, the real me. We all do it to some extent - especially in this warped culture of ours where are not rewarded for being our unique selves.

It’s so maddening to watch the culture wars these days, knowing we are sliding downhill and there isn’t anything I can do to stem the damage - not while I”m so sick myself. So many good people

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5 year anniversary 3.14.19

5 year anniversary 3.14.19

Five years ago, today, I was getting my belly sliced open. I know that’s hard for people to hear. But it’s important that I share the truth of how I feel about what happened to me.

I was sliced opened and gutted.

I wish I had a dollar for every doctor that said “at least you’re alive.” Then, of course, I read accounts where doctors get cancer and are sobbing in the hospital saying “I didn’t know…I didn’t understand how it bad it is on this side.”

There are a few books by Dr. Mitchell Gaynor I really like - The Gene Therapy Plan is an excellent one for anyone that has a genetic cancer gene like myself. He is a super open-minded MD that worked in prestigious hospitals but also offered his patients really interesting therapies like

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White space 3.13.19

I went to a practitioner I really enjoy chatting with yesterday. I didn’t feel well at all. I’m still under the weather from the flu - it, of course, just compounds the weakness from not eating enough and all the other aches and pains. The reason I rarely mention having something like the flu is because, it’s so temporary! I’ve been dealing with some health issues for years now. Something that lasts a week, maybe two? Meh. That feels like a jog around the block to a marathon runner. Not even worth bringing up.

BUT I am bringing it up this time because it’s coming at a time when I’m already feeling very weak. Very tired. Very frustrated. Very annoyed with our fucked up medical system.

There are so many aspects of my existence that I can’t always get written down. One of them is the feeling I had yesterday before and during my practitioner appointment.

I told her that I’ve been struggling to stay connected to the outer world. My mind

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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 went to ER 3.11.19

I went to ER 3.11.19

It’s hard for me to type. My eyes don’t want to stay open. But these are always the most interesting in my mind. When my body feels pinned down by a virus, pain, too little food, the most interesting thoughts come through. I rarely try to record in the moment. I want to try even if what I’m saying doesn’t make sense. Worthy experiment.

I’m getting nervous for sure. I haven’t eaten eggs in days. I tried the elemental nutrition powder yesterday and my stomach went a little bananas after. Could have been virus. Hard to say at this point. I usually don’t introduce multiple products, not projects, at once. But it’s fairly crucial that I get as much in this body as possible.

So last night, I started having a coughing fit and was struggling to breathe. In my old life, I would have made some tea and gone to bed. But now, I get scared

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Can I do it? 3.10.19

Can I do it? 3.10.19

I have some sort of bug. It’s turning into a hacking cough. I hate being like this. I hate being a sick person. I Hate not feeling strong. I hate not working. I hate begging for help. I hate that my family is in so much denial.

Am I also in denial? I launch these projects and make goals - is it totally futile? With this cough / bug, I can’t do my evening routine which means no eggs. How many weeks can I do this? Should I go to the ER and get admitted so I can get TPN (nutrition through my IV line)? I hate having to make all these serious decisions - back and forth back and forth in my mind. How sick are the doctors going to let me get before they will step in to help?

My nurses say that they often wait until people are near death before covering things like TPN! Oh, and I’d need to fail a feeding tube as well! I can’t IMAGINE the Nestle shit they put in the tube feeding - and I’d still need to get that out of my intestines! The TPN bypasses the gut. But there is not good data for long-term use of TPN and my gut could just shut down

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I feel like an old lady 3.8.19

I feel like an old lady 3.8.19

I wish I could find the words to convey what it feels like to feel 90 years old on the inside. To wake up and wonder how I’m going to find the energy to get through the day, which I feel most Fridays, wrecked from the week. I can feel it at any time, though, depending on how much food I’ve eaten or if I’ve done too much in prior days.

I slept 12 hours last night. Which you’d think would be common for me. However, my biochemistry is such a mess that I often sleep like an old person. I wake up often and rarely get past 7 or 8 hours - and I realize that a lot of old people would say: that’s a long night! I know. I get it. I often sleep 5-6 hours per night. I rely on a LOT of herbal remedies to sleep beyond that. Now, for some people this is plenty! I have one family member who rarely gets sick and doesn’t need a lot of sleep.

I’m not one of those people and never have been. I used to be a very, very hyper person - most people who work in the culinary field are

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I never look back 3.5.19

I never look back 3.5.19

I love science fiction. I usually pin that on my brothers but I also think it’s because I’ve struggled with health problems for most of my life.

I dream of living in a world where things like fucked up intestines can be fixed.

There are all kinds of movies and shows I think about reviewing or discussing through a feminist lens, but haven’t been sure where to house that kind of content.

Well, I decided to just go for it here. Too much running around this brain. I’m gonna write whatever the FUCK I want on this site. I’m tired of corrupt tech companies profiting off my content anyway.

I don’t run into people that have seen the movie Gattaca often. I’m not a huge fan of Ethan Hawke (not even in the 90s!) but I LOVE this movie.

I haven’t seen it in awhile and I’m intentionally not reading about it on the Internet because I want my memories of it to be pure.

Without giving too much away in case you want to see it, it takes place in the future where a person’s entire life - including the kinds of jobs they can get - are determined after their blood and DNA are taken at birth.

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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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Debrief on CA trip 3.3.19

I got back from California one week ago but it feels like it’s been a month. That’s the strangest part of my current life. I realize a lot of people feel like time is moving really fast. I don’t know how it feels for everyone else, obviously. But for me, my health issues happen unexpectedly. So whatever I was doing is interrupted and I have to drop everything else, quickly pivot, and address whatever crisis has arisen. It’s super frustrating! I hate not being able to count on consistency in this life. Often, I turn around and an entire month and all of the plans I had for that month are lost in the blur of pain and crisis. All the trauma makes this especially challenging. I keep having new trauma, boom, boom, boom, over and over again.

Let’s back up and start again: I forget that ONE day, when people know about this blog, I may have readers that don’t know my story. You can read an overview of my story here to catch up.

I went to San Diego mid-February for what was supposed to be a restorative 10 day trip. I would visit my old clinic, get IV vitamin infusions since they take Medicare, talk to a couple of new doctors and meet with my old primary doctor that focuses on hormone replacement therapy. I had plans! To walk on the beach!

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