The days speed up 9.1.19

I took this while I was looking through my bathing suits and packing for Vashon. I think it’s time to donate this pair of swim shorts.

I took this while I was looking through my bathing suits and packing for Vashon. I think it’s time to donate this pair of swim shorts.

I gained three pounds!

Ok, so I peed a little later and lost two of them. But still!

I’m reluctant to share this part of my journey because there are so many people who struggle so much with weight issues and body image.

But it’s part of the deal in this strange life of mine. Being nervous about losing weight is part of my disabled experience.

I’ve been hanging onto the photos from the last few months because I haven’t felt ready to share this different version of myself. But this photo wanted out today so here it is.

I bought these swim shorts after the melanoma surgery when I was heavier than I’ve ever been so these are two of the extreme sizes I’ve ever been at - I took this last week so I’m actually “bigger” here than I was in July, that was a baaad month. I’ve gone up and down on my weight for my entire life. I’m very short so even a few pounds can alter how I look. Also, I should note that I often buy pants that are too big because I’ve never liked having anything too tight at my waist so many years of having stomach issues. It drives the salesgirls nuts, they’re always encouraging one size and I’m like noooooo…give me the ones that have a lot of room in the waist.

I like to be comfortable!

Still, these shorts.

Sigh.

It’s weird. It’s weird to have my FRAME change, not just the weight. I had no idea I was so attached to my hips and butt! No idea.

There’s a scene in Booksmart where they’re on drugs. The two main characters are running around feeling like little barbie dolls, and the heavier actress’s character says: where’s my booty? Or something like that.

It’s not always an AWESOME thing for every single person to have their frame turn into something that OTHER people deem the “standard.”

It’s not something I’ll be able to write about it one post, because of our culture’s obsession with weight and body image. It’s a complicated topic. Lord, I’d take any shell at this point, truly I would. The ME that I consider myself, doesn’t feel that attached to the outer self anymore. It’s been battered, and scarred, and morphed in so many ways these last few years, I’ve HAD to separate my inner self from the outer self. It’s in large part why I like changing the hair and adding the tattoos, because it’s marking the different shifts I’ve felt internally. I think it makes it easier to look at the idea of sharing shells, for another day as well.

I got a little too flirty with my tattoo artist yesterday. He started it! I think he was surprised I could get down in the gutter so easily. We were doing a consult in the lobby, so there’s people around and it was just some fun.

We both know that it’s still business. It’s part of his schtick. No way I’m messing with this, it’s harder to find a great tattoo artist that you gel with than it is to find someone to keep the shell company for a little while. It took me two years to find someone local that I liked!! I had to schedule a second consult for tomorrow - which is a little close to my trip but I didn’t want to wait, I’m a little obsessed with each design, they’re pushing their way out of me like the words - because it’s going to be a major one on my left arm and we didn’t finish it yet.

I haven’t felt that flirty in awhile so it was good to flex that muscle. Sometimes I feel like that part of me could disappear. But then. I get an iron infusion and it flares back up again! Ok, I’m still in here, I think.

I never know.

I never know what else I’ll lose, what else will disappear from this body. That’s why I feel like I HAVE to become more and more detached from this shell. I can’t get too hooked on how it looks or how it works, because, BOOM, it could lose another function, or ability to eat something or need different IV bags.

It makes it both harder and easier to consider sharing this shell again.

I must confess. I feel differently about touching than I used to.

Someone at the funeral came from behind me and wrapped their arms around me when I was losing it by my dad’s grave - we sold his car yesterday, all that’s left are the license plates, it feels so wrong, I can’t go there, I can feel the tears and I’m too tired to cry right now, so much to be done for this trip, trying to be a little social and not just have my life be errands and doctor appointments and laying in bed, that’s no life - it was an old friend, a woman.

This is something I wouldn’t normally think much about. I feel very lucky that I haven’t had issues around touch, I’ve spoken to many girlfriends about it and I know I’m in the minority. I don’t know if it’s because I grew up around so many people who are extremely touchy - which I’m sure has a lot to do with it, there is a LOT of physical affection in my family - or if I’m hard-wired that way.

Now?

I pulled this friend off me (and said “where’s my megan?” that exact phrasing which I’ve never used before, so sweet). I felt bad about it later, but then I thought: I can’t have someone come from behind and do that without consent. My stomach often hurts - I rarely will complain about that in a regular conversation because it’s so ever-present - and also, I was hooked up to my IV bag and I’ve got tubing coming out of my body! If someone’s arm or watch or whatever gets stuck on the tubing, they could rip the needle out!

I have a lot of physical things to consider even if I can “pass” as an able-bodied person.

I guess I’m settling into this reality - FINALLY - that these changes are likely not going to go away any time soon. I really thought I could get off the IV bags when I moved from California to rainy Seattle in 2016!

It’s been three years. I think it’s time for me to accept reality. I hate being on this fucking drug that helps me reabsorb fluids so I don’t take it in the winter. I will remain hopeful that there is someone on the planet that’s invented ways to improve my adrenal issues.

But I still won’t have that colon! It’s main job is reabsorbing fluids! If I’m having some issues - that fucking tofu mousse might have been the culprit along with the cornstarch this past week, though I think I’m mostly “un-stuck” now, I’m slowly remembering all the things I piled in there last week. I said out loud: I think that chocolate tofu mousse messed me up and my mom said: you’ve said that several times.

Shit. NO MEMORY of it. So I made a note with tofu mousse and put a cross through it on my bathroom mirror. I will need to stare at that for at least several weeks so that it will fucking enter my long-term memory.

Otherwise, I forget. I don’t really eat chocolate bars anymore - I gave those up a long time ago - but I’ll buy something once in awhile. If I put it in a drawer, I’ll forget it’s there. So that’s a good thing.

Not remembering what HURTS me? Kind of a problem.

I remember when I discovered that tequila is a stimulant - gets those bowels moving. I’d forget, and then remember. Forget, then remember. I finally put a note on the bathroom mirror that just said TEQUILA! It had to spend a few months on there but now I remember! I rarely use that. I’m not into alcohol these days.

Touch and booze.

Those two things have gone hand in hand for many years for me. I’m only beginning to untangle it now.

It’s so common!

I’m nervous to wear a bathing suit - not because of body or aging, I know how lucky I am and thankfully I don’t have old baggage around that - I’m nervous because it makes me feel extra vulnerable. And people look at the needle bandage. Occasionally, the mesh cover will slip down - it gets stretched out by the end of the week, the bandage and the mesh band are replaced every Friday, except for this week, I forgot to schedule a bandage change BEFORE my trip, the nurse on Friday had to remind me, so many details, I’m working on a list of pre-trip tasks and that will be one of them, fuck it’s not easy - and I’ll see people glance down at the bandage on my arm, especially now when I’m wearing short sleeves.

It’s not pity I see when they notice it. It’s more curiosity,

But it’s that. Whatever it is when they glance down, I’m still getting used to.

I already feel like I get stared at it as it is. I guess that’s why the mohawk is preferable - this is a change that I GOT TO choose. Look at my hair! Look at my tattoos! It’s not that I’m ashamed of the needle - I just don’t want it to be the ONLY thing they see.

I don’t know. I’m still working through it.

I don’t want to be afraid though. I don’t want to be afraid to leave the house for a couple of nights. Or wear a bathing suit in public. Or…let someone close.

That midnight texter. At least the dense ones make it a bit easier. Me, man, me want woman with vagina. Needle or not. I’m not ready to write about dating women, that’s intimidating to me, both the sharing and the doing, especially sober and intentional.

FYI I really wanted to use another d-word besides “dense” but I’m trying to be polite here.

At least they’re easy to find. Shooting fish in a barrel.

I find it so baffling! How unwilling so many are to make a few shifts, a few changes. This one keeps texting the same thing over and over and I want to write: you DO know that doing the same thing over and over again and expecting a different result means….

I say nothing like that, though sometimes I say something a little harsh, just to see what will happen (I get bored and he asks for it, if I’m transparent about where I’m at and he keeps asking for it, then I get to say and do what I want). Still keeps at it. I find it amusing. I know, I shouldn’t. But he makes it a little too easy. I check in and ask myself: do I want to hang?

Nahhhhhh.

But I don’t want that to come from a place of fear. Only from a place of irritation - which thankfully isn’t that hard to discern.

I don’t know! i don’t know anything! I’m turning 48 fucking years old in NINE FUCKING DAYS.

HOW THE HELL DID THAT HAPPEN?

I’m so fucking lucky to even GET to a 48th birthday, I’m FULLY cognizant of that.

(It’s really frustrating when able bodied people tell me I’m lucky to be alive, or I’m lucky to have privilege or whatever the fuck. I’m like YES I AM AWARE OF WHERE I AM LUCKY BECAUSE THINK OF ALL THE WAYS THAT I’M UNLUCKY how would I need to be aware of what IS lucky with so much bad luck? Thanks so much. Is it lucky though? IS it? To live the way I do? Hungry now. So hungry so much of the time. Shrinking, slowly, so slowly that ables pretend like I’m fine? I should show them this photo but they’re so conditioned by years of People magazine covers with the same image being EXCITED about weight lost that it’s hard for the brain to flip it around and go: oh shit, Julie, this is not good. Eeeeks.)

I’m super nervous for this trip, but I want to do it so badly. I’m so aware of how easy it would be to continue to hide. To stay at home. To not take chances. To close everything down.

I’ve got to fight through the fears. Make myself uncomfortable - I guess that’s something I’ve always done, maybe that’s one of the ways I get through this, people ask me all the time, how do you do it? CHALLENGE MYSELF.

I like to challenge myself. I like to set goals that sound really, really hard - like publishing a cookbook by myself, moving to NYC without a job, traveling abroad on my own, starting a podcast, creating an exercise video series, all of it are challenges for myself.

If I’m not challenging myself, then I don’t feel alive.

Now I do things like: can I get to my target weight. Oh I should explain, I got three pounds ABOVE my Target weight, ok for a hot minute, just lost the third pound after peeing again, but still! I ate cheesecake last night. It’s the dairy. That’s the only way I can keep the weight on. The sheep’s yogurt and goat cheese are healthiest sources of this, but I still have been going a little nuts with the whipped cream and cream cheese. I often don’t want to eat any of it, it sounds gross, and I’m tired and it’s a lot of work to get food OUT of me, so putting it IN me sounds very unappealing.

But I want to travel this week and I’ve got to have a little cushion in case something goes wrong. When my port needle site got infected in 2017, I spent a week in the hospital and lost some weight.

I’m very nervous about that aspect. My brother found this awesome “cast cover.” He thought to search on Amazon under “cast cover.” I didn’t use the right terminology all this time! $20 and arrived the next day - Amazon is a beast but like I said, for us chronically ill folks, it’s a fucking miracle - I’ll test it tonight. It’s got the material used in wet suits at the ends.

The port infection was due to a water-borne bacteria - I most likely got infected when I took a bath in the hotel in eastern Washington when I was helping people sign up for healthcare insurance in 2017.

Sigh.

Water.

I love water. Have I mentioned that in here? One ex called me Little Mermaid because I’d jump into any body of water. He was scared of water he couldn’t see through because of where he spent his childhood so he’d just stay on land while I happily splashed around.

I love swimming in the ocean SO MUCH, pools less so. I hate the chlorine. The one sense of mine that works really well is SMELL. I can smell those chemicals for days emanating from my skin.

I do hope to go into the hot springs while I’m on this trip. I’m very nervous though. I’ve gone to this place for many years and I’ve noticed that I’m much more comfortable going places that I know well now. I doubt that I would have taken that herb class if I didn’t know the campus so well. But I could plan things in my head before I got there - ok there’s a bathroom on that floor, the cafe will be open if I need something even though I brought SO many beverages that day with me.

Shit I need to go to the store today and stock up on all my foods and drinks.

Panic starts to well up in my chest. What if I forget something important? What if I start to feel sick? What if I forget my sleeping herbs and I can’t sleep? What if I forget crucial medical supplies? What if my bandage gets wet? What if something I can’t predict happens?

The anxiety starts in my chest.

Oh! By the fucking way, guess who figured out that the low iron was causing the muscle cramps / charlie horses. My doctors? No. My dietitian? No. My other practitioners? No.

My wax lady. Yeah, my leg was cramping up while she was waxing my legs (we’ll get to my feminist slant on body hair another day, I like how it feels after a wax, not because I give a rats fucking ass what anyone else thinks, I do what I want, more on this later because if people feel like they want to go around hairy, DO IT), this woman from Vietnam, my age, doesn’t speak English very well.

SHE is the one who figured it out.

She helped massage my leg while I’m kicking out the spasm and she says: iron.

FUUUUUUUCUCCK of course. Geezus fucking christ it takes a god damn planet to keep this body of mine going. Also? I looked up symptoms from low iron and CHEST PAINS is in there.

Do you know how many doctors I’ve been bugging about the charlie horses? They’re VERY painful - not normal ones at all - and they linger for quite a few minutes, the pain.

My wax lady.

Iron, she says. I had the same thing. She’d get winded, a little tiny thing, I feel like an Amazon woman next to her, and she’d get tired climbing stairs.

Lord. I hope some of my energy comes back. This summer has SUCKED. Sleeping so much. 50 points! My iron dropped 50 points in a few months. I see some old photos and notice that I’m pale even for me. Not such an easy thing for me to do, to look paler than usual. But I did.

Last vignette and then I’ve got errands, and kiddos to hang with. I’ve also got to keep packing. I scheduled my new girl tomorrow and Sarah on Tuesday to make sure I’m packing everything I need. I’m considering having her drive me to my appointment at the tattoo place. It feels too heavenly. To have someone to help me get all these things done. I’m running errands so quickly, I have to jam all my usual stuff, plus the packing into so few hours. Each one, running in, getting it done quick, running back out.

The last thing I want to do is spend my last remaining months on this planet running errands, laying in bed, and going to doctor appointments. No way.

So I’m going to travel. Take some calculated risks. Perhaps flirt, we shall see how I feel (though I’ll be the first to admit that I’m a master at finding reasons to avoid all that, I don’t “'appear” that way, which I’ll admit, I kind of didn’t dissuade people from their assumptions, red hair and big tits! They must know EVERYTHING about me from those two things!). Maybe put my body in some healing hot springs - they tubs are very dehydrating so that’s a worry too.

Oh yes, my vignette.

I’m in the wax room with this very thin accordion door, so I can hear the women in the next room chatting. I’m not paying attention because, as usual, I’m half dozing, I’m so immune to pain that I can doze while getting my legs waxed, YUP. I barely felt my tattoo while I was getting it too.

I’ve been working on this character to “poke fun” at this certain demographic. It’s like that gravely Kardishian way of talking. Whenever I use it now, people start laughing. I did such a good impression that my mom said: stop, it’s so annoying.

I said: THAT’S THE POINT.

They don’t even realize how they sound.

Or that they have someone like me in their midst. That’s how protected they feel in their little bubble.

Listen to what else they sound without thinking for ONE second that there may be someone in that space that would be offended.

OMG yes my husband plays tennis with her husband, yeahhhhhh, then I picked up my kid from college (in this world, it’s totally acceptable to be completely in charge of college age children, times have changed, I doubt my parents would have noticed if I left for an entire weekend in high school, I think that actually happened, curse and blessing from coming from a large family, I’d sometimes do that, I’d go to Portland for the weekend and someone would have forgotten I said I was leaving, where’s Julie, one time, my mom told me No, you can’t go to Portland this weekend. So I packed up my suitcase, rolled it to school, and had a friend drive me downtown to the bus station to visit tape guy, we were always doing shit like that. I took the Greyhound bus by myself, omg I forgot that story, I took the bus back and met this tragic girl who was telling me how she took acid the night before and slept with three dudes, I plucked myself out the bubble I lived in as much as possible, I liked to walk the world and meet people you’d only meet on a Greyhound bus, I can still see her in my mind, long blond hair, lord, I hope she’s still alive and doing ok, I can’t remember the rest but her and I had very, very different upbringings).

Anyway, long story short. They were SO dismayed to find out their kids LOVE Travis Scott.

Ladies: Have you listened to it? It’s RAP.

That’s when my ears perked up. Ohhhhh what are they going to say, I’m laying there, intently eavesdropping.

Ladies: She played the music for me and I was xxxxx (can’t hear all the words, no bionic hearing in this body)

Ladies: Note to self: before buying concert tickets (for my college age child who is technically an adult, but since I control the money, I control what they do), know who they’re going to see!

They had no idea how they sounded. There was more to it, even a casual mention of “water polo.”

NO IDEA.

Barf.

I was hoping that I’d be done before they left, so I could walk out of the wax room, mohawk, sinewy muscles, tattoos, and give them a Look.

But no. That damn testosterone makes the process a little longer than in the old days so they left well before me. Ahh well. Just as well. Better if they don’t know. Better for me. The ladies at the store like me and my mom. They’d met my dad a couple of times and were very upset to hear of his passing.

My wax lady said yesterday in stilted English: you look better now, before, you didn’t look ok.

Yes, I know. I know.

Living here…I recorded a podcast with a friend yesterday on women supporting women. We met at improv and realized we went to the same high school at the same time - the one on this island. We’ve both lived all over, she’s super cool and open. I had so many things happening yesterday, including getting the podcast done, I wasn’t able to write.

Ok, I may need to shut my eyes again. I get so damn sleepy writing in here. The words finally released from the cage of my mind, floating in the ether now, instead of pushing their way out.

Damn I hope this trip goes well.

Please, please let this trip go well! Let me be brave! Let me not have anxiety attacks! Let me be out with the People and paint and explore and escape and discover and not be afraid to travel at least locally!

Phobias. I’m afraid of them! Hahahaa. I’m afraid of phobias. That’s an awesome sentence. I am though! I’ve never been a phobia person, I never understood how I got away with it. I actually like snakes, heights, flying, all of that. Now I’m afraid of driving anywhere with really steep cliffs or drop-offs - bridges, things like that, but that’s new, it didn’t start until my forties.

I can see other phobias lingering in this room. Staaaaay, they say. Staaaay here, don’t go out there, it’s scary bad things could happen.

FUCK YOU PHOBIAS. No, NO fucking way I’ll let you seep into my soul.

Even if it means taking risks, I will not be ruled by fear. NO.

I’d rather go out in a blazing flame of glory among the People, and out in the world, then hover in here for years. No fucking way.

Because I’m JULES and I can conquer ANYTHING!

(ok not totally feeling it, but this will be my new mantra, thank you sean, thank you friends for believing in me, thank you world for not giving up on me, whispering down my long dark tunnel, you can dooo it, jules, dooo it, go for it, say what you need to say, do what you need to doooo, doooo it, go for it….)

So I will.

Not without worry or anxiety.

But I will.

If we give up trying, to push ourselves, to challenge ourselves, then what’s the fucking point of being alive?

Taking chances, calculated ones that mitigate risk, of course, I’m still sensible and rational, has got to be part of my equation, or I won’t want to live. It’s already a struggle, but without any challenges? Or goals?

No way. I’ve lost too much. I can’t lose that part of me too.

Can I do it? Can I share myself more widely? Can I push my story out? Can I share my medical story openly without shame? Can explore things I’ve always wanted to explore but was too chicken shit to do before?

We shall see.

The young people. They love what I’m doing.

They think it’s AWESOME. Fuck the stick in the muds, water polo pfffftttt.

It will be interesting how long it takes them to figure out that they’re already way, way behind the eight ball.

Travis Scott omg rapping! BLACK PEOPLE SINGING CRUDE LYRICS OMG OMG my tax break money paid for THAT?!?!? OMG my CHILD! MY CHILD IS LISTENING TO RAPPPP MUUUUUSSSIC what did I do wroooong?

Eye roll emoji times a million.

Deep breath.

Deep breath.

Fingers crossed I can get done what I need to get done. A little more writing and then I’m up and adam.

Your nervous friend,

Jules