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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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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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 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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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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