SLEEP IS GOOD 8.25.19

This is what my room looked like on Friday after the home nurse left. It’s quite messy by the end of the week so I’m counting the days until my new person can start helping me out. The table sat like this for a couple of days - which normally would depress me because it feels like I’m in a hospital - but strangely, I wasn’t upset about it. It just IS. I guess this is something called acceptance??!?!? (maybe slowly happening)

This is what my room looked like on Friday after the home nurse left. It’s quite messy by the end of the week so I’m counting the days until my new person can start helping me out. The table sat like this for a couple of days - which normally would depress me because it feels like I’m in a hospital - but strangely, I wasn’t upset about it. It just IS. I guess this is something called acceptance??!?!? (maybe slowly happening)

[[NEW PODCAST is UP: It’s an interview with my friend Sean Cadin called “Vulnerable Men” - check out the links to articles on this page and listen to it on iTunes and Google Play!]]

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 wait so long to pack? WHHHHHYYYY?

Her and I are planning on going to Vashon on Wednesday. I need to start packing now! Lots of company today but I’ll have to make it work. I’m trying so hard!

I’m so hungry today. I’ve been hungry lately - sometimes I go through periods where I’m not that hungry even though my caloric intake is roughly the same as the periods as when I AM hungry. I had a super busy week and obviously, I’m not taking in enough calories to really do everything I’m doing.

This is a good opportunity to explain how this works.

So our bodies store nutrients and calories - gd my oldest cat is really acting strange lately, not like his old self at all, he’s super athletic normally and now he gets awkward when having to get off the bed, I think he’s going blind too, I tried to give him catnip and he wouldn’t eat it because he kept thinking it wasn’t there, it’s so depressing, anyway, he gets upset when I’m on my computer a lot so I have to type in this really awkward position sometimes - in our cells. Let’s just leave it as “cells” for now to keep things simple.

The body won’t get pregnant if there isn’t enough calories and nutrients because there has to be enough to grow a baby. One of the reasons that women who don’t give birth age slower is for a lot of reasons! But one main one is that the baby literally leaches nutrients out of the mom’s body. If she is a pretty healthy person, then that deficit won’t impact her too much. If she hasn’t eaten healthy for many years, it can be hard on both her and baby.

When I ate super healthy for 25 years, I had great storage of nutrients and also calories.

I was able to “ride” on those healthy years for quite a bit of time after my surgery. That’s why I looked the same, for the most part, after my surgery for several years. I just found a photo of me that bestie took right before all this hell went down. So I must have been about to turn 42.

I looked like I could pass for late twenties. At the TIME, I don’t see it. I just see myself looking back in the mirror. Photos are funny like that. How they can help us SEE things we don’t normally see.

Now that my gut has been compromised for so long and I’m not eating my salads, and beans, and grains, and nuts and seeds and all the good plant food that is “nutrient-dense” - a term we use often in the nutrition field, might as well get a lot of bang for the buck is how I looked at it while I made veggie-packed soups and had the salad people add different nuts and seeds and beans each day - I’m slowly losing that storage.

Each food has different “star quality” is how I used to teach that concept. So if we eat a variety of these plant foods, we’re getting a wide range of nutrients.

Now that my diet has been so limited, and this winter really hit my body hard - the stress of watching my dad die on top of everything else - I don’t have the nutrients I need to get through the day.

Let alone fight cancer or other bugs.

My skin and nails have looked much better the last few weeks.

All that different broth and the company and the enormous effort I’ve put into adding in the omega 3/6/9 supplement and protein smoothie each day (I took the last few days off because all that powder is hard on my system and I’m trying to get rid of the pain, which I think I have now, I really want to do a pretend colonoscopy prep to clean myself out before I travel but it sounds so depressing, I didn’t end up doing it this weekend and now I have people coming over soon, oops! Can’t do it now! Ugh. I really should though it’s hard on my system and very dehydrating. That won’t be a fun one to test so I can determine what kind of dosing I’d need to do even a partial clean), has made a big difference.

The problem is this: what has been adversely impacted this past year? Which organs have been the most hurt? Is there anything growing?

This is my main worry these days - that I’m not getting enough of the right nutrients, I’m trying to see if I can get insurance to pay for the fancy lab test so I can get it more often and we can really start to titrate my supplement dosing for optimal-cancer-prevention levels, not just keeping-me-alive-levels. I hope this explains things a little bit. I’m marking this for a longer post when my brain has the capacity to write about that. (Please please PLEASE let me be able to download this information in a way that people can absorb it!)

I had one MD - one that I love and may even do a Skype appointment with even though he lives very far away now) tell me: you likely have microscopic cancer growing even now due to your condition.

Later, I told him, please don’t tell me things like that. My brain soaks that kind of thing up (we all do, but some are more susceptible than others, I’ve always taken to acupuncture and hypnosis very easily, while others who want to block out that sort of thing can do it, but I think there’s some of us that are more receptive on an unconscious level, I’m so sensitive to medications, it’s not surprising that I’d be sensitive to alternative things as well.

I also said: we ALL have microscopic levels of cancer growing! That’s what cancer is! Our cells that don’t grow right. Most bodies, however, can get rid of those cells - if they have the right immune system army - which I don’t - and they’re eating the right foods - which I can’t - and not under enormous stress - stress is overlooked a lot in medicine. Obviously! The whole medical system is SET UP to be stressful.

I know it has a huge impact though. I’m very afraid to travel now, but I know that the benefits will outweigh whatever stress I’ll endure getting out of town.

I hope.

I hope.

I hope.

Ok homework assignment! I need to write two things. Oh! Also I had an idea! I’ve been trying to write down notes each day about what’s happening with my medical case - I used to be so good about this but it gets old, like anything else. I started it back again and thought: maybe I should write it at the bottom of my blog posts so that I’m accountable.

I’ve got to find ways to be accountable! It really helped to write in here that I’m no longer eating the Trader Joe’s cookies. It made me want to stick to not eating them so I don’t have to admit I ate them! That’s an awkward sentence. So many of my sentences are awkward! I’m reading through my old posts because I get nervous about what I’m saying. The faster I write, the worse the awkwardness is. Oh well.

Then I thought: well what if people that are amateur medical sleuths or people who love to research or people who just love me, want to follow my case. Should it be it’s own page? These are the things I have to work out. I think I found the perfect organizer drawer thing for all my ideas. I’m going to test it out.

Getting my content organized is paramount now! I can’t get a handle on my medical case - in ANY capacity - if I don’t organize as much as I can from this brain. Slowly, very slowly,

HOMEWORK! Dang I’m long winded. Ok.

One is supposed to be a list of what I’m looking for in the therapist and the other one is what I want to work on. Geezus, that list could be LOOOOONG. Might as well dig in. If I do it here, then I know I’ll get it done. Plus, I could then turn this into a piece to submit (?!?!?!!? why am I so freaking nervous about that? I’ll jump out of a plane and dive with sharks BUT THIS is the thing that paralyzes me!) I tend to start things in a draft in my email and then…yup! I get distracted. Distracted and scattered are my biggest enemies.

FOCUSING too!

Obviously!

I’m going to focus now.

TRAITS I’D LIKE IN A THERAPIST - and DEAL BREAKERS

Someone tough but very compassionate - they have to be able to call me out even when I’m spinning a good story, no easy task, but do it kindly and compassionately.

Someone that has experience with disability and trauma - for sure trauma since I haven’t done enough work in that area and sorely need it.

Someone with an office I can get to without too much struggle - good parking feels important to me in this bananas city. Ideally an entrance without a lot of steps or anything that will make me nervous on my wobbly days.

Someone that’s as woke as possible about disability / medically fragile / being on government benefits / being marginalized

Someone that has excellent communication skills, both for our appointments, and also to model.

I’d love it if they knew some EMER (it’s a form of therapy that helps release trauma, I’ve done it a few times and it’s quite remarkable what it brings up and how it can heal an old situation) and/or hypnosis but these aren’t deal-breakers.

Nothing too far away, super expensive and definitely no homophobes or anyone that is bringing their shit into my appointment - a very professional person who keeps their own issues buttoned up.

WHAT I WANT TO WORK ON:

Grief (not limited to dad), anxiety, and future. (My friend wrote this as a start and I’m leaving it because it’s a really good start!)

Work on releasing trauma! Past ones, recent ones, all of it. Go over whether I have PTSD and suffering from issues around that.

Learn how to handle things in as mature way as possible when I get triggered - this is especially challenging now that I’m dependent and spending so much time with my family of origin.

Definitely methods to handle anxiety especially around interpersonal issues, communicating with loved ones about things that I’m struggling with, intimacy issues - but also around the anxiety from being on government benefits and being dependent and the worsening outer world - lots to be anxious about!

Work on communication skills and ways to convey difficult things, especially around disability, grief and intimacy.

How to handle being in a fucked up medical system and deal with toxic situations, in and out of the medical world.

How to maintain strong boundaries, but still allow people in. How to convey my needs around disability in a way that’s protective of me but is also mature, woke and helps the other person * hear * what I’m saying - even if they can’t handle it, I still want to know the right way to express these things.

How to handle a lot of pain - both mental anguish and physical pain - tools to make sense of everything that’s happened to me.

Help me figure out what the hell I’m going to do in this next chapter, and what kind of place I need to live.

****

Ok list is done.

I did have a good conversation with my mom about the future and our living situation. Neither of us knows what the hell we want. How is it possible that my DAD IS DEAD THIS IS STILL SO HARD FOR ME TO WRAP MY HEAD AROUND HOW IS THIS POSSIBLE?!?!??!?!? He’s on a bike ride right now! Shooting around the city! Or running errands! My mom and I are dreading cleaning out the work shop and I lamented the 15 cans of mostly empty paint thinner. I said: I don’t even know how to dispose of that! My mom said: there’s a hazmat place in Factoria - DAD WENT EVERY WEEKEND THAT HE DIDN’T BIKE RIDE to drop stuff off. Light bulbs, whatever. The guy was so ON IT. How are we going to do this WITHOUT HIM. Sometimes we just look at each other like WTF HAPPENED how did we end up here? I’ll tell you how LYNCH SYNDROME. That’s how we ended up here! A little genetic fucker that’s the main cause), it’s all just so overwhelming. All of it. At least we’re slowly figuring shit out.

So much to consider.

I was thinking about that trip to California versus how I’m approaching travel now.

My biggest mistake?

I traveled with an able-bodied mindset.

Big mistake. Huge.

I was still thinking like my old self, which I can no longer afford to do. I’ve GOT to be more vigilant. Otherwise, I could….

Anyway, now I’m thinking about what I’ll write to the place I’m staying up north. How I’ll phrase my needs.

I think that’s a pretty good list about the therapist. I’m going to send it to my friend, make sure I’m not missing anything obvious. I’m always missing obvious things.

I have so much to do on today’s list but I’ve got to get other things done before people come over!

Your well rested friend,

Jules