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.

Communication is Key

It's common for me to forget that I'm disabled. I'm always in pain, but that has just become a part of my day-to-day life. The intensity of it will vary, but not the pain itself. So I actually forget that most people don't have ANY pain unless they hurt themselves.

However, I pretend to be "normal" all of the time. A term the neurodivergent community has coined as "masking." I am a huge masker. This is why communication is so key.

Beautiful coffee from my mama.

Mindfulness activities like a body scan through my day are massively helpful. I tend to dissociate from my body. Anyone would living with constant pain. But that's not actually useful or helpful. I also have a severely delayed pain response. Typically I can do a hard activity like intense gardening and then not feel it or notice till about 12 hours later. This makes it a big challenge to know my limit.

Mental energy is different for me. I can feel my brain battery actively going down. Draining minute by minute. So mental tasks can become difficult for me quickly. 

Since all of these things are hard for me to realize, I know that people around me, even those who are mad about me, won't know how I'm feeling unless I tell them.

I am still disabled. My dis-ease impacts my daily life and ability to function in a pretty major way. I have to monitor and pace myself in ways no healthy person does. I also struggle with constant pain in levels that would send your average white man into screaming fits on the floor. 

The receptionist at my pain clinic asked me over the phone yesterday what my pain was at between 1-10. It was a good day so I answered honestly about a 6. Reminder, that was a GOOD DAY. I'd say I average about a 7. I message my doctor and make an appointment if it's a 10. I've never been to the ER for pain.

I tend to share with my mother much more than my husband. He's an abilist who tends to be a bit dismissive. I think that's a reflex most people have. To instantly compare their experience with what they're hearing. I'm guilty of it too. It builds relatability. And frankly, he's not the best listener at times.

So it becomes very important for me to clearly communicate what's going on in my body frequently. Not ad nauseum, but frequently enough to get the point across. I'M DISABLED! I can't/shouldn't do that. I need help. I'm exhausted. I've hit my limit. I need a nap. My pain is really bad right now. Etc...

Not how my nails looked a month ago.

I've started having problems with my fingernails. One of them is lifting off the nail bed. All of them have become thin and brittle, splitting painfully and breaking even though I keep them short. Copilot told me that it is likely from my Mitochondrial Myopathy and could also be an Iron deficiency. I showed my husband and talked about it with him. Something I likely wouldn't have done in the past.

I also have a hemorrhoid right now due to my chronic constipation (a side effect from my pain medication.) Sorry for the TMI, but it's health related. I've never had one before, despite my fears. I was shocked I didn't have one much sooner to be honest. When I do finally go I'm like an adult rabbit. Hahahah.

And let's not even get into the massive stye I just struggled with. 

Point is there's always something going on with my body. Sometimes you can see it. Often you cannot. That's why communication from me is key if I'm to have the real kind of relationships that make life so fantastic.

A thoughtful gift from a good friend makes my day.

Help is on the way!

There's a quote floating around that I think most people have heard. It's misattributed to Einstein when really we don't know who said it first.
"The definition of insanity is doing the same thing over again and expecting different results each time."
Personally I strongly feel that sums up seeking out health care help perfectly. Each time I talk to or go to a doctor (or specialist) I feel like I'm just saying the same things over and over again, but expecting different results.

I messaged my primary care doctor late yesterday in frustration from the muscle weakness in my arms and legs coming back on. I had felt like it was getting better, but then it was back to being a bit worse. I messaged him asking if there's any way he thought the muscle weakness could be connected to my back problems. He messaged me back quickly (which I hugely appreciated) saying "Do you have pain in your neck and back?"

This blew my mind because:

1. YES!
2. I've had neck and back pain as long as I can remember (as in I literally saw my first chiropractor for back pain around age 5.)
3. I've told him many times I struggle with chronic back and neck pain
4. He requested a back and neck x-ray not that long ago
5. He gave me a prescription for 800mg Ibuprofen for back and neck pain
6. I mentioned it again when he gave me a referral to the first neurologist a year ago
7. I mentioned it again a few months ago when talking about exercise (as in "I'd love to do more, but it kills my back." To which he replied "I have back problems too" and that was the end of the conversation about my back.)

To be fair he's not the only doctor I've talked about my back issues with, so it could just feel like I talk about it endlessly when really I may bring it up once a year or so. I'm willing to give him that. After a bit more back and forth he suggested I try Physical Therapy. This was something I had in the back of my mind anyway for the RA, so I happily agreed. I think my words were "YES! I'll try anything!" 

When I got my x-ray results a few years back I made this chart for myself to see where the damage was. I'm a very visual person, so I found it incredibly helpful. My doctor called it "multilevel disease" which was the first time I've heard that.

On top of the lovely bladder infection (that's getting better by drinking tons of water and unsweetened, disgusting straight cranberry juice) I also had some painful sores on my tongue. I suspect it's from coming off the Plaquenil. My body's trying to grope its way back to homeostasis (or something like that?) 

I gargled with salt water last night and it's feeling better today. 

Can you say "cootie monster?" 

I have cooties.

Despite all my complaining, I'm actually really relieved. I'm glad that I have a doctor who I can message and he gets back to me so quickly. I'm glad he had a new suggestion (something we haven't tried yet.) I'm glad that he thinks my back problems could be contributing to my other issues and that it seems like he really heard me this time.

And despite what it sounds like my life is much bigger than just all of THIS. I'm making some lovely salmon and rice with salad for dinner. I've been studying all day for a test I have to take this Wednesday for my license. I had a lovely e-mail exchange with a friend today. I'm seeing some family for lunch on Friday (hopefully to celebrate my passing of said test!) And I'm rocking my favorite pajamas as I type. See! Not so bad at all.

Decision

I made a decision today. It's one I've been mulling over for a few weeks. One of the major side effects of the Plaquenil that I'm experiencing is muscle fatigue. It's making "being out in the world" a challenge. I'm hoping it will be gone soon, but in the meantime it's really impacting my life. The decision I made was to ask my doctor for help. I asked for a temporary "Handicapped Parking Plaque."

The fatigue started about two weeks ago, but feels to be getting progressively worse. I have a message into my rheumatologist about it, but I also told her when it started. She didn't seem concerned. 

Not only do my leg muscles tire very fast, but the bottom of my feet hurt for no reason and tire super fast. This makes walking not pleasant. Most of the time it's not a problem as I live in a pretty small town. But it has already come up where my husband had to drop me off closer to where we were going because of parking and my not being able to walk really far without my muscles literally giving out.

The back of my mind is holding onto a fear that this is just a new part of the RA that I haven't experienced yet and actually NOT a side effect from the Plaquenil. But I find that unlikely. 

In the meantime I feel grateful to have an understanding doctor who wants to do what he can to help me. His response when I messaged him to ask was perfect. He simply said that he was sorry to hear I was struggling and I could drop off a completed DMV form for him and he'd take care of it as soon as he could. Yup! Lucky.

There's another side to this "Disability Plaque" that is important to mention. Not all disabilities are visible. Though I do have friends who use a wheelchair and even they've been screamed at by nutters in a parking lot for using their plaques. Isn't that just amazing? I didn't take the decision to ask my doctor for help lightly. Nor will I take the decision of when to use it and where lightly. I'd rather have it and not use it then really need it on a bad day and not have it. But I do know that the fear of judgement or confrontation is often enough to keep others with invisible illnesses/disabilities from even asking for what they need. That thought did run through my mind.

Funnily enough thinking about it as yet another tool was helpful. And knowing that it will be another option for me if I need it. I asked myself if I felt I legit would benefit from it and if I had it in the last two weeks if I would have used it. The answer to both of those is "yes." Not all the time, but there were a few instances where I was panicked and stressed because of the fear of having to park far from my destination. I don't need to live like that if there's an option.

The permit will be good for 6 months. Then I can re-assess my situation. I'm proud of myself for being such an advocate and for asking for help when I need it.