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 lost my green fleece 5.17.19

I lost my green fleece 5.17.19

I have almost no short term memory.

I don’t talk about this much. But it’s a huge factor in my day-to-day experience.

A lot of why moving out of this space sounds daunting is because I’ve finally figured out a system to compensate for the memory loss, which is probably due to massive amounts of chemo.

Most ovarian cancer patients get 6 weeks of carboplatin and taxol.

I had 18 doses of taxol.

One gyn oncologist in Seattle he thought that was an unnecessary protocol.

We’ll get to that another day.

For now, I deal with the loss. Every day. I have to put everything back in it’s “home” or I can’t find it again.

Fast forward to packing yesterday. I’m supposed to leave soon but I’m so dedicated to writing in here, I’m making sure I get it done before I head out! Thank goodness it’s not raining. Have I told you how bad my vision is? It’s always been bad, and especially so in the rain.

I see better with contacts than glasses but because both sides are going now (I’ve been -6.25 which means someone with excellent vision can see something at 600 feet that I can see at 20 - and yes, that’s pretty bad), I rely on glasses.

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I can travel (I think) 5.16.19

I can travel (I think) 5.16.19

I am very nervous for this trip tomorrow.

I used to never get anxious for trips.

When Megan and I went to Israel on one of those teen tours back in high school, she was so nervous. I was like why? I didn’t understand how scary these things are for introverts.

Well, now I’m more of an introvert than I’ve ever been (I’ve always swung between extrovert and introvert - people always assume I’m all extrovert but that’s because they don’t see me hiding away in my apartment reading for days on end!). Social anxiety is REAL. That much I know now.

On top of the limited social interactions these days, I get nervous as hell about transporting this body anywhere. What if I forget medical supplies? What if I have pain again? What if what if what if….

That trip to California seriously traumatized me. Getting on a plane again will require significant preparation. It’s hard to explain what it’s like to feel a certain way about traveling for many years (yeah! I love flying! I love going somewhere new! I love exploring new cuisines! I love meeting new people!) and then go 180 (I should just stay at home, I might get sick, I might not even have a good time, it could go awry).

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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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I'm actually excited 5.14.19

I'm actually excited 5.14.19

I realize it’s really hard to fathom my existence.

I know this because I struggle with trying to wrap my own head around it.

As time goes on, I am forgetting what it’s like to eat normally, which is actually a good thing.

I can’t miss what I don’t remember.

I guess it would be like someone who loses their sight.

Eventually, they don’t see colors anymore.

It’s been a really long time since I felt excited for…anything, really.

I haven’t shared how incredibly dark things got for me this winter. I see why so many people end up committing suicide and people around them are confused: why didn’t they say anything? How did I not know?

I wasn’t ever at a point where I felt in danger of actually ACTING on it.

But the suicide ideation was DEFINITELY present and strong. And consistent.

I think I’m getting ready to write something about this for the public. But I’m just now crawling out of the fucking ugly dark hole I’ve been in for months.

If my dad keeps getting sicker, I might be crawling back into that hole. Or another hole.

I don’t know how the darkness works exactly.

I only know that I’m either IN it, or NOT.

Even though my dad isn’t technically doing well, he is at least in decent spirits.

I’ve been meaning to post an update about him on Facebook for a good week.

I can’t do it. It’s because I keep hoping we’ll get better news than we’ve had. I don’t want to tell everyone that he had to stop treatment and may have to do chemo.

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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 am a lucky lady 5.12.19

I am a lucky lady 5.12.19

I don’t have much time to write today! I dozed a lot today and then spent time with the kids. Now that the weather has cooled down, I want to walk outside for at least part of my walk.

It’s so interesting to me how I feel about Mother’s Day NOW versus how I felt about it in prior years.

It’s not an easy thing for a woman in our culture to opt out of having kids. Mine has half opting and half medical reasons.

Before I had huge tumors in my ovaries at age 41, I could have gone either way.

The weird thing is I always thought I wanted kids. I never imagined being married when I was younger. But I always imagined doing cool things with kids! Somehow that vision ended up becoming reality!

It’s hard to admit in this culture that I’m very happy about how this area of my life worked out. It’s gotten a lot easier for me to be honest about this thanks to the millennials who are so open about so many things. They’re so real about the pros and cons of becoming a parent.

I feel like my generation was the last one to do things by default. I felt SO much shame for

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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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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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This was not a fun day 5.8.19

This was not a fun day  5.8.19

The reason I wasn’t able to write yesterday (I posted something there just now to cover that date) is because the day was absolutely bananas. When it didn’t need to be.

I drove myself to my IV vitamin appointment which already irritates me. It’s a half hour drive there and an hour home because of traffic - now if the medical system allowed for me to get these AT HOME, it would be a lot cheaper and a LOT easier than commuting for a 45 minute IV bag I could easily administer myself.

There is magnesium in the bag which makes me a bit sleepy. I do my best to rest while I’m there so I’ll have cognitive focus to do the drive home.

Lately, I’ve been bringing chicken broth, tea with honey and nut milk, and my protein drink. The Vitamin C can lower blood sugar, so I’ve had to be very careful about maintaining a constant flow of salty or sugary fluids. I never used to get low blood sugar before all of this. I could go without meals, no problem.

Not anymore!

So at the end of my appointment, one of the ND doctors flushes my PICC line.

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I feel better on fluticasone 5.7.19

I feel better on fluticasone 5.7.19

I already feel better on this drug. Though, I was a little hyper last night given how little energy I should have had. That means I had to take a 1/2 Xanax to stay asleep all night. Oh and did I stay asleep!

I’m so relieved - and lucky - to have this drug. I just wish it didn’t mess with my sleep so much. I did get a lot done last night!

The space where I usually walk on the treadmill is being painted - WAHOO! - so I HAD to walk outside. I dry up faster when I walk outside. I waited until evening so that it was a bit cooler. I am always happier after a walk outside than on the treadmill. I hate feeling like a fucking hamster all of the time. Walk, move, stretch, walk, move, stretch.

And yet, the medical system is STILL moving sluggishly along to get me more nutrients in my IV bag.

See, if I get more nutrients in my IV bag, THEN I DON’T HAVE TO WORRY ABOUT EATING all my calories. Then I don’t have to take so much effort to try and get it OUT of me.

But nope.

I’m a little rat, a little science experiment

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Warm weather is hurting me 5.7.19

Warm weather is hurting me 5.7.19

I’m not doing so well in this warm weather. I was so wrecked yesterday from a long doctor appointment, the weather and my class, I didn’t have time to write in here!

I feel like such a Debbie Downer that I’m not thrilled about the warm weather.

Not being able to eat hardly anything as a former culinary person is one kind of hell.

Being trapped indoors on beautiful days is a whole other level of torture.

Climate change is definitely going to be tough on a lot of medically fragile and elderly. Our systems can’t always handle the heat.

I’ve been giving myself daily IV saline bags (sometimes with amino acids and vitamins) since May of 2017. I’ve noticed my need for more and more saline has gone up, slowly over the past two years.

During the winter last year, I NEVER needed more than one bag. This winter, I gave myself two bags per day quite a bit.

There is a drug

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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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I don't like goat milk 5.3.19

I don't like goat milk 5.3.19

I’m working so hard on figuring out what I can eat and what I can’t eat. That’s why it’s especially irritating when a doctor I barely know acts so suspicious about whether I’m trying new foods.

OF COURSE I AM. Geezus.

I got a little overzealous last night and downed some carrot juice and devoured half of this non-dairy cheesecake (it’s not that big, but still, for me I must do small quantities slowly for pretty much anything) from Whole Foods that I bought when I picked up the goat milk.

Today, I’m paying for it. I don’t know which one is causing the trouble. Maybe neither. Maybe both.

This is what happens when I get a little cocky - or I’m just starving - and the pain hasn’t been so bad. I like the cheesecake (well, like might be a strong word) but I like how it makes me feel like I ATE SOMETHING. Liquids just don’t cut it! And three eggs is all right…I don’t think there is going to be any eggs today, unfortunately.

It’s astounding to me what the medical world requires in order for me to get more nutrients via my IV. It would be so helpful - and way less painful - if I could get more through my blood rather than forcing my gut to try and absorb things that may or may not be aggravating it. Nope. They act like I’m asking for a morphine drip. While launching into outer space.

Pain is so strange - and for the record, I have really high pain tolerance, always have, just for fun I’d play soccer in high school without shin guards and now…? - when I’m not in pain, I feel like I can be productive! Catch up on computer work!

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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 had lame doctor appointment 5.1.19

I had lame doctor appointment 5.1.19

I love when patients help other patients.

I remember going to a nutrition talk when I was around 19 years old after living with the inflammatory bowel disease for around two years. I can still see the speaker in my mind’s eye - how does long-term memory work? I’m so fascinated with neurology.

She was very young and told us to drink Ensure who had clearly sponsored the event. This must have been around 1991, before the Internet. So the room was PACKED with people with IBD and their loved ones. As people started asking questions, the rookie speaker looked visibly unprepared for the onslaught of nutrition questions.

After a few awkward minutes, other people in the room started answering each other’s questions. I was so young and the experience was so profound that it seared in my memory.

Hmmmm…it’s often the GI patients that know more than the practitioners.

Fast forward to this post I shared above. I’ve never tried having them

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I'm in a time warp 4.29.19

I'm in a time warp 4.29.19

I wish I could explain what it’s like to not be sure how much time is left in one’s life.

The ambiguity is hard to live with - I could be gone in 9 months or I could last another 9 years. Or somewhere in between.

I’ll tell ya this much: if these doctors don’t get their act together, it’ll definitely be closer to 9 months.

My dad isn’t doing well at all which always throws me. It’s so strange. If I’m not doing well, I can remain stoic and battle ready. When he is sick? I start to lose it, I get spacey, I have a much, much harder time concentrating. Friends advise me on how to grow my following on Instagram and I’m like I don’t know if I can concentrate well enough to do any of that.

Ever since he got sick in the fall, the clock seems to be ticking louder and louder in the house. Now, it’s me and him shuffling around the kitchen: which one of us will go down next? Which one of us will go down for good?

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I like feeling really strong 4.28.19

I like feeling really strong 4.28.19

I wear an extra small now.

I loathe even writing that.

It’s weird to have something that so many people want so badly - or think they want - and to hate it.

I opened this Athleta catalogue - I’m not sure how I even started receiving it since I never shop there - but I like looking through the workout clothes. I’ve got to let go of the past and give away - no THROW AWAY, they are sooooo old - my old workout clothes. The pants literally slide off my hips now! What the fuck!? I’ve had hips since I was 16 and no amount of healthy eating or workouts has changed that.

Until now.

Now that “society” is finally embracing super strong looking women like the ones in this photo - and women of color woot! - I’m turning into this frail little lady. ARRRRGGGGHHHH! It’s like seeing gluten-free waffle cones at a vegan ice cream place - all the foods I love and can eat are EVERYWHERE and I can NOT EAT THEM.

My timing sucks.

As I’ve mentioned in here before, I’ve never aspired to be waif-y thin. I’m trying to remember when my ideas around that started forming. I feel really lucky I didn’t obsess about my body shape much when I was young.

I was WAY more concerned with

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