One day at a time 3.23.19

One day at a time 3.23.19

Then again, my life is Hell so….not going to be too hard on myself about any of it. Whatever gets me through this chapter. This is one of the healthier outlets I could choose so be it.

If I make an ass out of myself on here, who the fuck cares.

Best part about possibly being dead within the year? DON’T GIVE A SHIT ANYMORE.

Who the hell cares what anyone thinks. Or how many followers are reading or any of that business. So tired of a culture that worships such fake and superficial things.

It’s like it’s all become so warped, nobody even realizes how abnormal it’s all been and becoming.

I tried watching The Dirt about Motley Crue

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Creepy dream 3.22.19

Creepy dream 3.22.19

I don’t feel like writing today. But I also like forcing myself to be accountable to this blog. Keeps me tethered to something that feels like “work” which is important for my mental health.

I’m trying not to wig out. I’ve been through so much scary shit these past years and I keep thinking I can’t possibly be super terrified about a new thing, and then lo and behold, I can!

I took this photo last night. The mottling seems worse at night. I stopped putting heat on it the last 5 days - which is a bit tortuous for me. My hot water bottle castor oil packs provides a lot of relief. I don’t think I’m going to eat eggs today. Just stay in bed. My body is wrecked. I think I ate 11 eggs this week? Not bad. Though not obviously enough to keep an entire body going.

Something about that 5 year mark…it’s like my GI is like biiiiiiittttch, you pushed us FAAARRR now we need ALL the attention.

A part of me does feel like

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It hurts 3.21.19

It hurts 3.21.19

I hate feeling like a whiner. Can we get that out of the way?

I hate feeling like I’m complaining all the time. I kept so many challenges I’ve been dealing with off the Internet for a long time because of this. This is why I like writing here so much. If people come to read, they WANT to read. I can just go on and on about the CRAZY shit going on in my life.

I’m still processing that doctor appointment yesterday. I only had IV vitamins today so “easy” day. I can’t believe I have an appointment tomorrow at 10am! Ugh that’s very early for me. My brain is barely working during my “good” hours, I hope I can manage the appointment. I felt so sick yesterday during the appointment.

I will admit, I’m having a hard time finding the fight in me to continue this.

What’s the point? I’m going to find a way to keep my body from dying from malnourishment and then what? I was waiting for my ride outside the doctor office - have I mentioned to you how amazing it is to get RIDES to these appointments. I have no idea I did what I did for so long. A

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Lost in the medical system 3.20.19

Lost in the medical system 3.20.19

I have 20 minutes until a helper is coming by to tackle my paperwork. I don’t know where my days are going. I am very spacey.

In all these years, I’ve never once fainted. It’s weird. I’m super crazy strong in some ways and in other ways, so incredibly fragile.

But I’ve never fainted, I don’t even get dizzy. Which the medical people are often surprised about. Dizziness and nausea are typical for people with compromised gut issues - especially when food gets backed up.

All day today - and much of the past week - I’ve been dizzy. Like holding onto the walls when I walk dizzy. This makes me very nervous. My BP was I think 102/70? at the doctor’s today. Low, but not obscenely low by any stretch. That’s low, though, for having given myself 2 liters of fluids per day over the past week.

The weather is warm though and that’s not great for my body. It was 80 degrees today! In March. Fuck. I’m so so happy to have long days and light. But climate change is terrible for someone like me. Eventually, I figure I will have to live

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I feel like shit a lot 3.19.19

I feel like shit a lot 3.19.19

I’m still not feeling well these days. The pain in my stomach has been worse than pre-February 2019 for awhile now. And I feel achy, sluggish and “off.” I dragged my ass out of bed yesterday to attend the last improv class of the session. I already missed half the classes! UGH that annoys the fuck out of me. So not my style to commit to a class and then miss that much. But that’s my life now.

I put up a photo of myself with my class members on Instagram and realized people will be so confused! How can I feel so awful and still go to a class? I guess I have to more clear about how this all works:

I can attend something even when I feel like complete dog shit. I mean, there are definitely times that there is no way in hell I can get out of the house - either due to fatigue, stomach pain and/or being stuck in the bathroom. But I didn’t eat much on Sunday which meant

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How do I keep doing this? 3.18.19

How do I keep doing this? 3.18.19

All I can think today is: how do I keep doing this?

HOW THE FUCK DO I KEEP DOING THIS?

The fight. Omgosh I’m such a good fighter.

But even the best get knocked down and don’t get back up.

Even soldiers get a break. Athletes. Parents. Workers. Everyone can take a breather at some point.

I would give just about anything to get a break for this body for even a few days. Just one morning, where I could wake up and eat what I want. Poop like a champ. Go throughout the day without ONCE thinking about my body and medical case.

ONE DAY. I would take even one day.

I woke up today to one of my volunteers sending me reminders for doctor phone calls. It was perfect. Why did I wait so long to do this? I made the phone calls and then dozed off.

I told the ER doc yesterday - the nice one - that my days of sleeping and not wanting to eat keep getting longer and longer.

Him and the kind nurse both made faces that reflected how bad they know that is.

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What keeps me going 3.16.19

What keeps me going 3.16.19

I’m struggling with a topic today so I asked my nephew what to write about and he said “what keeps you going.” He then said, “don’t focus on what’s hard for you, focus on what keeps you going.” And then totally deadpan, “and list me and my brothers first. Of course.” I put out my hand for a high five / fist bump, I’m proud to be your auntie acknowledgement and then took a photo of the face he was giving me.

What keeps me going:

The kids. Of course.

Hmmmm….let’s see…I can do this.

Great conversation! I just had an amazing chat with someone I’m going to interview on the podcast about the kink community which was super interesting.

Uhhhhhh….what else.

D came through for me again. He said “fighting for injustices. If you stop, then your enemies win.” (Apparently, this profound wisdom on social media. I was so proud and then he said that it was from social media. Well, at least they are getting some good data.)

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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 got out! 3.9.19

I got out! 3.9.19

I’m pretty happy that I made it out last night (Sat 3.9). And I look pretty healthy in this photo which makes me happy! After I got the IV bag on Thursday - and some more nutrients in my IV bag on Friday as well - my skin color went from gray to pink. I’m going to have to do those bags every week for awhile - until we can figure out how to navigate the Medicare / medical system issues. I can tell the difference when I’m doing the IV bags AND the powdered nutrition - I don’t feel as “off.” And as always, I use my skin as a barometer to my inner health.

Getting out of the house was probably not the best for the bug / cough I have going on. But these outings are SO important for my mental health. I love getting together with lovely people! It makes me so so happy, even though I’m exhausted and can’t eat! Good company is like food for my soul, almost more important than

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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 got IV nutrients 3.7.19

I got IV nutrients 3.7.19

My body hurts. I didn’t want to write here. Then I started thinking about how these are the days that people don’t hear about. The days where I crawl into bed after an appointment - I got some tryptophan in my IV bag which makes me sleepy - put on some music and doze off.

So much of my life resembles an elderly person. I don’t know how to convey that to the doctors, that I’m so tired of not being able to eat enough food, so tired of not being believed that things are worsening.

I can tell what’s going on with my body. I can feel how things are going. I’ve been paying close attention to it since I was a young woman and had the inflammatory bowel disease.

I know when it’s not good. I remember in August 2013, I thought to myself: do I have cancer?

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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 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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