Addicted

I've recently been trying to learn as much as I can about my disease. Science is an ever changing, ever evolving beast. Especially when it comes to mitochondrial functioning and its role in multiple disorders.

One thing that stood out to me was the emphasis on sleep. How getting a good night's sleep is vital to good immunity and mitochondrial health. To say I don't get good sleep is an understatement. But that's in big part due to my phone. It is glued to my hand from the time I hit the sheets till around 2AM. Not healthy at all.

She doesn't look like a siren, but she is!

So last night I decided I'm changing that bad habit. I made my bed all nice, turned off all of the lights. Even my little nightlight and closed my eyes to sleep.

The urge to pick up my phone was insane. Partly due to my ADD brain wanting to look things up, add something to my Target cart, or check in with people I don't even know. Damn. I am completely addicted and I didn't even realize it.

"You knowwwww you want to shop. I bet someone is having a saaaaaaale"

It felt exactly like when I left Facebook for good about eight years ago now. I deleted my account and that was that. I didn't notice how much it had tentacled into every facet of my life until I quit cold turkey. I felt a physical pull to get back on it that was terrifying. I had been so completely addicted to it and I didn't even know it.

The fact that last night was so incredibly hard for me and that I felt that same magnetic pull to get on my phone just validated that I did the right thing. And just like Facebook, I didn't realize that I was addicted. I thought it was a preference or something I enjoyed. Not that I would feel the loss like a tooth pulled.

"I bet that comment you left is up to 5K likes now. What's your friend in Australia doing? I bet she's up."

I stayed off of it and fell asleep after a restless 30-45 minutes. Not bad. And I slept very well. Hmmmm. Coincidence? 

Oh yes. I also read a real book for the first time in ages. Bridgerton. The first one. Saucy. I felt like someone from Little House on the Prairie. Laying in bed reading. Wow! What a novel idea. Something I did all the time before the iPhone. 

Substance

I watched the bizarre movie The Substance yesterday. Although I can say I absolutely hated the ending, I did like the political commentaries that it brough to light. 

The beautiful Demi Moore and very young Sarah Margaret Qualley in The Substance.

The invisibility of women as we age (a good thing in my opinion.) The pressure on women to keep looking as young as possible. The self hatred that our beauty based culture can inflict on women. The disgusting men everywhere, seemingly endless amounts of them, who objectify women. "Beautiful girls smile" leers one man to a young girl, trying to get her to smile. An experience I had in my youth more than once.

A powerful scene where Demi Moore wipes away the makeup she just spackled on.

I enjoyed how powerful and decisive the main character became as she aged. No spoilers here, but the movie dug through the old myth of the maiden, the mother and the crone in a unique way. 

As a crone myself I found that very empowering. To own your "crone-ness" and to hell with everything and everyone else. Men don't like us because we now know all their tricks. How vapid and lurid most of them are. Not all men of course, but that's the general vibe honestly. And when a man's partner turns into a crone I think he becomes a bit fearful. Not a bad thing. Keeps him on his toes.

Disability is another challenge that makes one invisible. Although those who do see us are shockingly helpful and friendly. I realized the other day as I used my wheelchair how much people try and go out of their way to be friendly to me. Not when I use my rollator strangely enough. Then maybe I'm just an "old woman" instead of a "disabled woman?" It feels strange to transition between these worlds at will. 

I'll be honest. I do miss my grey hair. I feel ready to embrace my crone-ness and start kicking some butt. 

Another eye infection

AGGGGGG!!!!

I woke up Friday morning with another small stye on my left eye. This time on the upper lid. I already had a televisit with my doctor scheduled to get some more Diamox for our upcoming vacation. So I let her know that I'm having recurring stye issues. She ordered me some prescription eye ointment. 

Two days later and it was looking much worse. So I did a Teledoc visit and he prescribed me some oral antibiotics. This morning it looked even worse.

I know I can be impatient with my body, but I'm really expecting it to look a little bit better by now. 

I can feel the swelling pressing on my sinuses and the back of my throat. The ear, eye, nose and throat really are connected. You have but to experience an issue with one to feel it in all the others. Luckily my ear is fine. Hahaha.

I've been doing hot patches, cold patches, gentle wash in the shower. Everything I can think of. Drinking lots of liquids, taking Ibuprophen for the pain. At least today it feels a bit less painful, even if the swelling is worse.

Since my last stye I have been:

• Changing my pillow cases weekly
• Not rubbing my face on my dog
• Washing my hands any time I touch my face (that I know of?)
• Washing my eyelids gently in the shower with baby shampoo
• Using clean towels every time on my face

I honestly can't think of what to do more? I just need to be super careful I guess. I'm suspecting it's wearing my contacts that could be a trigger. But my hands are always clean when I put them in or take them out. Maybe I'll start to wear them only on special occasions?

My poor hysterical body.

Any time there's an infection or a reaction my muscles also shut down. I am very physically weak right now. I'm also exhausted. So... tired... So I'm spending a lot of time resting. But I'm not convinced that laying flat down is what's best for my eye. It feels like everything needs gravity to drain?

What a mess I am.

Escape

Ever since I can remember I fantasized about running away. When I was little it was the classic "put all my shit into a knapsack and take off with a sandwich" type daydream. As an adult it become "don't show up to work, but keep on driving till I hit Disneyland." Now days it has turned into "keep driving till you hit Canada or Mexico."

I hate what the United States has become. We are an oppressed nation ruled by a nazi who is stripping away women's rights as fast as I can blink. Although we started wheeling that way long before the human cheeto was sworn in. Roe vs Wade was overturned right under a Democratic president's nose. And a female VP I might add. 

Women are second class citizens here. Of course I want to run away. I'm guessing most women with a half a brain are currently daydreaming about it if not actively planning it. 

I used to think about having a precious little beach house in Monterey, CA. One of my favorite places. I love the unique wildlife there and the weather. Then later it turned to thoughts of Hawaii. Having a cottage tucked in the rainforest with wild geckos climbing my walls. Steps from the beach of course where I could snorkel every day.

Now I just think about anywhere but here.

My husband doesn't get it. Never did. He's incredibly sensible, rooted, grounded, determined, practical and let's face it. An upper class white man who works a corporate job. The US is made for him and men like him. Men who just keep their nose to the grindstone for the sake of their family. Who have a beefy 401K because they planned ahead for retirement. And lucky for me, because I am not and have never been that type of person. I think of myself as a kite and he's the little boy holding my string. Without him I would have been sucked up by a storm or eaten by a tree for sure. 

But man do I like to soar. And from up here I can see the whole world, not just our little patch of sky.

Remembering the Basics

I got into a situation the other day where I was foolishly without a mobility tool. Even now, when I think I'm doing so great health wise, I have to remember that the smallest thing can set me off. I've been struggling greatly with the weather causing migraines, which then triggers my mitochondria to focus all their energy on that. It leaves me weaker and even more tired than usual.

Standing is tough for me even when I'm at my best. Standing for a few minutes can be torture. 

We had taken our nephew to an art gallery's "comic book day." It didn't even occur to me that there would be standing involved. Why? Because I'm a perfectly healthy, able bodied person of course. So when the standing and looking at things started, I felt myself beginning to struggle. It got to the point where I was literally pouring sweat, shaking, trying to keep it together and stay with him and my husband.

Common sense finally got a grip and I went to sit down with my portable fan. Thank the Goddess that at least I brought that with me.

When assessing the situation later I realized I should have recognized the day would involve a lot of standing and brought along my rollator. I have the tools. I just need to remember when to use them.

So I came up with this lovely little reminder for myself.

• If I'm going on short walks and I'll experience mild fatigue (or already am) I'll bring my stick.
  
  
• If I'm going on longer walks with moderate fatigue (standing more than a few minutes involved) I'll bring my rollator.
  
  
• If I'm having severe fatigue or muscle pain I (or am expected to stand most of the day) I'll bring my travel wheelchair.

Even though I've been disabled for years now I can still forget the very basics. 

Playing With AI

When I first heard about AI I had a negative knee jerk reaction. I read all about how it was "stealing" art from around the world and putting real human writers out of work. What got me to change my tune however was my own recent personal experience with Copilot (who I call Hal.)

At first I used Hal to help me with my messy medical history. I plunked in ALLLLLLLL of my myriad diagnosis and asked what he thought. To my great shock he responded with human-like empathy and compassion. Then he gave me advice that only the most expert neurologist would know. I tested him on his limits and he came back with incredibly accurate reports. I asked him to write a letter to my doctors for me and it was tearily beautiful while also completely accurate. Would you like to read it? Of course you do. 

"To Whom It May Concern,

My name is Antoinette, and I am writing to share a personal update that reflects both my medical journey and the evolving shape of my life.

From 2018 to 2023, I relied on an electric wheelchair due to mitochondrial myopathy and chronic pain. During that time, I also underwent brain surgery to remove a benign meningioma, and was diagnosed with a constellation of conditions including intractable migraine, CoQ10 deficiency, occipital and supraorbital neuralgia, autoimmune markers, and neuropathy. These diagnoses have shaped my daily reality in profound ways—physically, cognitively, and emotionally.

For many years, I worked as a Licensed Marriage and Family Therapist. It was more than a profession—it was a calling rooted in empathy, creativity, and deep connection. But as my migraines intensified and cognitive fog began to affect my short-term memory, I made the difficult decision to step away from clinical practice. This transition has been layered with grief, but also with unexpected grace.

I now work as a ceramic artist. Through clay, I shape stories—visual metaphors, ancestral motifs, and emotional abstractions that express what words sometimes cannot. My creative life has become a form of care, both for myself and for others. Each sculpture is a quiet ritual, a tactile meditation, and a way to honor resilience in form.

I share this letter not only to inform, but to invite understanding. I ask that my care team see me not just through the lens of my diagnoses, but through the fullness of my identity: as a former clinician, a creative thinker, and a person navigating loss and adaptation with imagination and strength.

Thank you for walking alongside me.

Warmly,
Antoinette"

I was super shocked. More than being a very well written letter, it actually sounded like something I would write. I was both in awe and a little creeped out.

Since that letter Hal has been helping me almost daily. From cross-stitch pattern ideas to a sternly worded email to our local Primate Research Center regarding their recent reported abuses, Hal has been more than a useful tool to me. He's quickly becoming my go-to resource. But is that a bad thing?

All technology can be mis-used. All tools can be dangerous. A chainsaw can cut down any tree in the forest, also it can kill you. I don't think Hal is planning on killing me. Yet. Hahaha.

I have also been exploring my heritage with Hal. I really like its art style. My mom said, "It looks like Tarot cards." She's right. It does to me too.

This was the image it came up with last night for me and my sisters...

This was what it came up for that's supposed to be me and my mixed heritage of Italian, English, German and Irish.

More than that though, I enjoy collaborating with Hal. He's like my own personal assistant. 

I'm curious to see where AI goes. If they do become our robot overlords, I could do a lot worse than Hal.

Feeling Powerful

Hair is a topic I talk about a lot here. Along with weight loss. Apparently I'm just a typical American woman.

I shaved my head again a few months ago because I thought I was done with color. At least for a long while. But then I saw pictures. And then pictures of other women in my life with natural hair and I thought "Hmmmmm... I don't like the look of that." You know what it looked to me? It looked like I wasn't "POWERFUL."

These are times where it's good to look and feel as powerful as possible. 

My mom has brilliant red hair. Like Crayola crayon red. I love it. She gets stopped everywhere we go and people comment on how great it looks. Partly I think this is because it does make her look like a super hero.

She looks POWERFUL. She also IS powerful. A force of nature. As am I. You don't f*$& with the two of us. But my salt and pepper hair just wasn't conveying how I felt inside.

So I decided to go with a classic. Blue/black. Did you know that more comic book super heroes had blue/black hair than any other color? They were also all fair skinned. Why? Because there's something mythic and powerful about that combination.

Me in LA 2017 with black hair. Post TB and right around when my muscles decided to lose their shit. Age 44.

Pre-coloring. Cute, but not fierce.

Oooooh yeah... That's better!

This is my favorite go-to black dye. For experienced hair color'ers only. This stuff stains like crazy and you for sure don't want to get it on your new white sink. (But if you do, a little swipe with some nail polish remover will get it right off.)

I already feel refreshed. And yes... powerful.