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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SLEEP IS GOOD 8.25.19

SLEEP IS GOOD 8.25.19

I have homework!

My friend that was listening to my podcast is helping me navigate finding a new therapist. HOW FREAKING COOL IS THAT?

This is why I keep sharing what I’m going through because it helps me connect with people who have ideas. We used to play soccer together in high school! I saw another message come through from someone else in high school with someone to follow who deals with stomach stuff after having cancer. It’s so SO helpful to have people share ideas with me.

Before I do my homework assignment, I feel compelled to share my dream only because I rarely remember them these days. But it’s such a good illustration of how much anxiety I have around travel now - something I used to do without giving it much thought.

I dreamed that I was about to leave on a big trip and didn’t start packing until a few hours before we had to leave for the airport. I broke down and called out to bestie, even in my dream, I was freaking out to her. OMG why did I

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I'm doing dangerous things (not on purpose) 5.27.19

I'm doing dangerous things (not on purpose) 5.27.19

I’m under a little stress over here.

Just a teeny weeny bit.

I don’t know how to describe it so I’ll share a story instead.

After coming home from the hospital and a brief respite with M where we tried to find me a restaurant that would give me JUST broth. The first place, they were total dicks about it. I try to be very patient and make it clear that I’m not asking because I’m on some trendy diet. I very carefully say: I actually lost organs to cancer so I can’t risk getting food stuck in there and need just plain broth.

No go. The (young male) server then added insult to injury and said: my friend had cancer and can still eat regular food.

I’m sure you can imagine how I felt after hearing THAT. I said a little bit testier: I’m sorry to hear about your friend but situation is completely different. I had 3 at once and lost several organs.

You’ll think I’m making this up but Megan will confirm his response: why are you comparing yourself to my friend? You shouldn’t do that.

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Edith is missing my dad 5.25.19

Edith is missing my dad 5.25.19

Let me tell you about Edith.

I got this plant at a nursery when I was 20 years old. I was trying to have a “grown up” home (hahahahahaaaaa whatever that means!). I’ve always been drawn to plants even though I still have not fulfilled my lifelong dream of having a garden.

She stayed with me through a lot of changes in my twenties. When I decided to move to New York City, I moved her to my parents where she has stayed ever since.

My dad has a whole system for watering her. As we often do, he and I developed an unspoken agreement that he would water her and care for her when I was gone. When I’d come home to visit, I’d trim her leaves, add more soil and sometimes give her some plant food.

Our plan must have worked because she is 28 years old this year!

Ever since his health worsened, she hasn’t been looking so good. I’ve been trying to water her regularly, but her leaves keep turning brown. Last night, even though her soil was moist, her leaves were drooping and facing one direction. They were all leaning toward the kitchen and away from the window.

I think she misses my dad.

It’s been a really rough week.

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It was a magical weekend 5.20.19

It was a magical weekend 5.20.19

did it! I had a fantastic weekend and felt ok physically and mentally!

This is a HUGE relief. If I couldn’t do a short road trip in my area, I was afraid my world would shrink even more than it already has.

Just thinking about that terrifies. I had a lot of safety precautions in place, just in case.

But all went well.

On the drive home, I was actually sad to be heading back. I didn’t care that I was sitting in traffic in Tacoma! That’s how happy I was to be out of the cocoon.

Out of respect for the community that has graciously welcomed me into their fold, I won’t be sharing any specific details about what went on during the weekend.

What I can share is that it was an incredibly healing experience. This photo was taken after I did an ancient ritual. My entire outfit is soaked in sweat here! And I’m very pale, but I did remarkably well given the situation. (Women wear skirts so I borrowed my friend’s skirt that is too short for her now!)

Let’s see if I can share a little bit without disclosing too much.

In 2017, I wrote a note for my 2018 goals which were: go to an improv class (check!), find a spiritual community that focuses on health (OMG CHECK CHECK CHECK this past weekend!), and figure out how to travel, even close by.

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I survived outside my cocoon! 5.19.19

I survived outside my cocoon! 5.19.19

I wish I could find better words to describe what it’s like to go from able-bodied to disabled in a relatively short amount of time - and at mid-life.

First, let me explain a few things. I’ve had issues with my GI track since I was 17 years old. I’ve had to be careful about what I eat for several decades. Even during my “healthy” years, I still didn’t eat a lot of things. I’ve never tolerated dairy and wheat very well - though a little here and there is ok. I can tolerate sheep and goat milk products much better than cow (it has to do with the size of the animals but that nutrition explanation is for another day).

However, when it comes to my physical strength - and not the functioning of my organs - I’ve been really, really lucky. I’m very chill about when and how I share this kind of information. I’m the last generation that believes in being humble! I used to read Miss Manners for FUN.

Plus, I’ve spent enough time about hardcore athletes droning on and on about their workouts and whatever else, that I’ve made a point to keep my athletic experiences mostly to myself.

But as I grow my online presence (this is just the beginning - even though I am feeling the urge to share a post on Facebook to clarify that I’ve never wanted this job - being out in the public SO much about so many personal things is not exactly a dream come true - and to fight evil? That may have sounded appealing during my healthier years, but now I’m fucking tired and older. And the whole thing sounds exhausting. I want to do what my peers are doing! But alas, I took the job. So now I will do it. And do it the best I possibly can), I will be sharing more exercises I’ve developed in order to improve poor motility function, and prevent injury.

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I hate feeling so overwhelmed 5.11.19

I hate feeling so overwhelmed 5.11.19

I don’t feeling writing here today.

I can’t stop sleeping, which is exactly what I need. I took a full Xanax last night which I almost never do. But I’m so desperate for a long, heavy sleep, I did it. It makes me tired the whole next day which I opted for so that I’d keep myself “down” today.

I have such a hyper personality that it’s challenging for me to hold myself back. I want to do SO many things before I die! Which I think we can keep at bay for awhile longer, now that I have my calorie intake steady again and better IV nutrition on the way. And juicing! I think my system has slowly allowed me to incorporate in.

I’m still very aware that my time on Earth is likely going to be short. There’s so much I want to do! So many words that want to be said!

It’s important that I reign in my urge to get shit done while on the fluticasone drug that is a bit of an upper. It’s not in the same class of steroids as prednisone which REALLY jacks you up. I remember when my uncle was on prednisone when he was going through chemo many years ago. My aunt would find him working in the garage at all hours of the night. I don’t remember being super hyper when I was on it but I’m sure I was.

Another friend said she enjoyed

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The warm weather is tough 5.5.19

The warm weather is tough 5.5.19

I used to love Cinco de Mayo. Strangely, I can’t remember any in particular.

Actually, that’s probably not so strange.

I’m very tired today. This warm weather is already wreaking havoc on my sensitive system. FUCK!!! I didn’t have to start taking the fluticasone until end of June last year. I’m already on two liters per day now and STILL drying out like mad. The weather didn’t used to be this warm so early in May!

Fuck climate change. And fuck all the people who keep pretending it’s not real. People like me will die as the weather inches up, while far too many people keep acting like they aren’t also at risk.

It’s so strange to me when people are in denial about how a destroyed habitat will affect the animals living in that habitat.

We think we’re so smart, humans. But I think we’re the only animals that are stupid enough to destroy our own habitat, while sipping our lattes in single-use cups, and planning our 7th plane trip for the year, without considering the impact those flights have on the atmosphere.

No biggie!!!

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Fucking fake cheesecake 5.4.19

Fucking fake cheesecake 5.4.19

I had a lot of dreams last night. I used to always have a lot of dreams. But now I take so many herbal concoctions in order to sleep, I rarely remember if I’ve had them, let alone the details.

I haven’t talked about all my sleeping problems. That’s for another day.

One of the dreams I had last night, I was dying my hair and it was long again. It was should length. I was annoyed the entire time because I couldn’t get they dye to evenly distribute in my hair (I’ve been dying and cutting my own hair for years - I would have become a hair stylist in another life).

I remember thinking: ugh I wish I had short hair again, this is such a pain in the ass!

People have been asking me to help interpret their dreams for years. I love it. And NO I don’t go by the goofy interpretations you can find online. I talk about how the dream is significant in the person’s life.

I would guess this has to do with my unconscious toying with the idea of going back to some of my old ways, or at least revisiting the old me.

Hair represents the feminine in so many ways. It’s interesting because

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Taking a moment to BREATHE 5.2.19

Taking a moment to BREATHE 5.2.19

I realized I feel less frenetic than I have in quite some time.

Though my diet shrank, whatever was causing the worst of the symptoms starting in mid-February seems to have calm down. I’m holding the current weight steady. My dad is…well, he’s hanging in there. They had to take him off the immunotherapy because his lungs overreacted to it and caused a ton of coughing. He’s now on prednisone! I keep warning him that he’s going to feel like he can climb Mt. Everest, but you know how that kind of advice goes over with parents. I have a doctor team in place, in case things get bad again.

But they saw his doctor early this morning and he seems hopeful that they can take care of my dad. I, of course, don’t trust any medical people easily. But he is highly recommended at SCCA and he’s really kind to my dad. That matters a lot.

I know that another shoe could drop.

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I don't miss old me 4.25.19

I don't miss old me 4.25.19

I’ve eaten 5 eggs this week. Oh joy! Of course, I’ve been downing the high protein almond milk and broth and whatever else I can get down, but DANG sometimes I can’t believe how much I end up doing with so little food. The body is a truly remarkable organism.

I’m tired now but if I want to eat eggs, I’ll have to do some Movement tonight. The choice between food and rest is always a tough one. I usually choose food!

This photo is from my old life in New York City. I had a photographer friend take “professional” photos which I planned on using for my own business. Maybe I did use this photo.

I dreamed of launching my own business for my entire life. Even as a kid, there was no allure for me to do the “keeping house” bit since I was already doing that as a small kid. No thank you to cleaning and taking care of kids all day, I remember thinking around 8 years old. Thankfully, there was just enough culture changes happening around me to know that I didn’t necessarily have to DO the typical path.

In 2008, I decided to leave my sweet job running a culinary program and work for myself. I knew so many freelancers in New York City, I knew it was possible to go that route.

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Do I go to Boston? 4.22.19

Do I go to Boston? 4.22.19

I wondered what I was up to a year ago and found this photo in my phone. It’s from Earth Day 2018! I can’t believe that was only one year ago.

I can’t help but wonder if I’ll be around in another year. Or, if I am, what my health will look like.

There is this low-level terror that I’ve been living with for so long - it’s hard to convey in words. I can smile and laugh, look put together, but underneath, I’m constantly on edge. As I’ve mentioned before, I have a constant monologue running in my head about my health.

Should I give myself another IV bag now? Or one later? Can I get away with eggs today? Should I email that doctor again or wait? Is the trip to Boston too much at this time? Can I make it if I’m still not on TPN at that time? Will the trip be worth it? Will it be too hot there? Should I start bringing men to my doctor appointments or will they still not listen? Should I try for Stanford hospital first since it’s nearby? Should I keep trying new GI docs here? What was that pain just now? Why can’t I get to an MD who will help me? Is this everywhere or is it especially bad here in Seattle? How sick will they let me get before intervening?

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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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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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Am I still a good friend? 4.13.19

Am I still a good friend? 4.13.19

I worry I’m not a good friend anymore. It’s something I’ve always prided myself on. Being a stalwart companion. Loyal to a fault (found out later, this is a hallmark of codependency - staying in situations that are harmful for too long but that’s not what this post is about!). I didn’t pair off, so my friendships have always meant the world to me. I ADORE MY FRIENDS. They are my family.

I want to treat them so well!

Now? I forget things. I never know how I will feel the days I’m going to hang out with friends. I try to stay on top of my correspondence but as I share more of my medical story, I’m concerned this will get more and more difficult to do. Corresponding is actually quite taxing, especially these days.. I’m trying to figure out a way to have someone help me with all that. The healthy side of me knows I could be missing important medical advice. The unhealthy codependent side of me is worried I’m upsetting people by not writing them back!

I’m under such pressure right now. I have to make the right decisions at the right time or…I won’t make it. It’s a pressure I don’t wish upon anyone (ok, ok, I WOULD wish this upon Mitch McConnell..grrrrrrrrrr, what a dream it would be to take THAT man down).

How do I juggle fighting for the IV nutrients that I desperately

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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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I got labs at home 4.5.19

I got labs at home 4.5.19

Have I mentioned yet how much my family appreciates nurses?

They are the unsung heroes of the medical world, FOR SURE. I’ve been having home nurses come to my house for almost two years now. They changed the bandage on whatever needle is in me - well, when I had a port in my chest, they had to put in a NEW needle. This is one of the reasons I prefer the PICC line - I don’t have to get poke every week. It sucks because I don’t get that ONE night where I get to sink into the bath and I never get to go swimming.

But really, these days, that feels like a small loss. And I LOVE swimming and taking lovely baths!

In the grand scheme of things, I can’t worry about that now. It’s interesting how something that sounds SO hard to lose happens, and over time, I get used to it.

I got my labs drawn by my home nurse this morning WHILE I WAS IN BED. Do you know how incredibly dreamy this is? The stress of trying to GET to my healthcare is a large portion of my stress. Driving, parking, navigating new buildings, getting lost, feeling stressed, paying for parking, forgetting where I’m driving…. So much of it makes my life hard.

That’s why having drivers lately has been absolutely fucking amazing.

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