Do I risk eating fish? 6.5.19

Do I risk eating fish? 6.5.19

I’ve been spending all day wondering if I should try to eat fish tonight.

I’m never sure how to convey what it’s like to spend SO much of my mental bandwidth thinking about something like that. Should I do two IV bags today instead of one? Should I try that new protein drink? Or is it too risky since I started that other one and still assessing?

The list goes on and on.

It’s hard to believe my athletic dad is using a walker, isn’t it?

So many able-bodied people just don’t understand how it works for medically fragile people.

You can be fine one minute and hospitalized at the brink of death the next.

It’s simply our reality. And yet, so seemingly hard for so many able-bodied to wrap their heads around.

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I am very tired today 5.15.19

I am very tired today 5.15.19

I’m going to have to invent better blog titles.

I feel like I’ve been dragged under a bus and then rolled down a long hill and then landed on concrete.

One friend was asking me to describe what the fatigue is like. The best I could come up with is that feeling you get when you know the flu is coming. Or, the feeling when the flu is gone but you still feel like you can’t do much. The second one is probably more accurate. It’s not full-on flu, it’s that heavy feeling where everything sounds hard. Basic tasks sound near impossible.

I know I’ve been ranting in here lately. I don’t want this to be all about my rants. I really would like to get to some gorgeous writing! Share some more life stories! Write some reviews on products! Organize my nutrition information!

So many thing!

Today, I will just try to get through the day. No matter how dark my curtains are, I can’t seem to sleep well in the bright mornings.

I’m trying to write coherent thoughts right now because

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Fragile bodies are very fragile 5.13.19

Fragile bodies are very fragile 5.13.19

I always have so many thoughts in my head while I’m laying in bed. I think of at least five different possible blog posts.

But when I finally open my computer, they leave my brain. Of course. Fucking writer’s angst.

I haven’t felt like writing in here lately. I like forcing myself to do it. I had a pretty decent piece flow out of me late last night when I was about to fall asleep. Like good enough to submit somewhere - which is saying a lot since my writing in here has been absolutely terrible.

The fact that I’m willing to publicly share my shit writing says a lot about how much I’ve shifted in recent years. I used to be so hard on myself about my writing! I still am, now I’m also accepting that part of being a writer is writing absolute garbage in order to get to the shiny diamonds.

When I started my business in 2008, I would torture myself writing email newsletters. I’d spend DAYS writing and editing them. I’d send them to my sister and my mom to make sure they weren’t absolute shit.

Now!?!? I post so many grammatical mistakes on my Instagram posts and in here! Lord. The old me is mortified. But the new me is like whatever man. Whatever gets me through the day and keeps my mind from breaking for good.

The mental health piece is such a big one for me these days.

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I can't wait to decorate 5.10.19

I can't wait to decorate 5.10.19

I gave myself 3 liters of fluids yesterday up until about 3/4am.

I’m giving myself one right now.

I’m dehydrating very, very quickly these days.

AND I started the fluticasone on Monday.

I’m trying not to panic. My nurses say they have patients that get 3-4 bags per day so I know you can live like that.

But what the FUUUUUUCCCCKKKKK is happening to me? Why are so many things worsening? How can I stop them from worsening better? Is it even possible to improve hydration and gut issues? Am I dreaming?

Or, do I rely on my old belief system that the body WANTS to heal, and given the right conditions and interventions, it WILL heal.

If only they hadn’t gutted me so badly. Geography and scar tissue are different beasts than inflammation or auto-immune problems. Nerve damage…

Ok, I’m not going down that road today!!

Can you feel how frenetic I was in my post yesterday? That’s partly the medication. Like I need to be jacked up at ALL. I’ve always been drawn to depressants, never stimulants. Caffeine and cocaine have never had any appeal to me.

Mellow me out, man!

(Can you tell I started my weekend already?)

OMG this week was SO bananas!

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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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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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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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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 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 am hungry 2.27.19

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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,

Jules