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.

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.

Rage and Resilience

 

Our world is full of horrors right now. Abroad women in Afghanistan are now told that they really don't need two eyes and that they should at all times cover one up. In Gaza everyone is being starved to death while reporters are bombed... intentionally. More reporters have been killed in Gaza than in every war ever put together.

At home a mad man is president. He has destroyed Democracy and women are being attacked right and left. Our rights are being stripped, our jobs, our art, our voices. The disabled are being intentionally murdered by vaccine and medication denial and no more support financially.

I'm very worried about my own disabled son who receives free medical care.

We've never been here in history before. Taken such a massive step backwards as a civilization. Men and their greed for power are murdering millions and millions of people. It's time women take power back. Men have proved they are unfit.

Personally it's very hard to keep aware of what's going on here and abroad without completely marinating in it. Balancing the fear with the resiliency. 

I do have a "go bag" packed. It contains cash, our passports, birth certificates, social security cards, medical information, all the information we need for the dogs and other important documents. My mother has the same. 

My husband made fun of me at first, but shut up after a friend of his said he did the same thing. 

We live in crazy, uncertain times right now. But even so, there is still joy to be found in friends and family.

A Snapshot in Time

 April 4th, 2018 I started this blog. I knew something was wrong with me, but I had no idea what. In 2015 I tested positive for Tuberculosis. I was on the drug Plaquenil for 9 months. It was awful. I had a whole slew of side effects and took a year off of grad school mid-way through a two year program. I was a wreck. 

At the time it was the worst thing that happened to me physically. HAH! I just have to laugh looking back. It's like stubbing your toe and thinking that's the worst thing ever only later to have all your limbs cut off with a chainsaw.

I won't rehash my complete timeline, because I did a good job doing it here with pictures. But writing a book about my journey has been on my mind. Given that I was thinking pictures are more powerful than words sometimes. My opening could be this montage of my journey...

Success is the word for this year.

I graduated with my Masters in Counseling Psychology. But by the end of the year I'm experiencing some pretty major fatigue. I intuitively know something is wrong.

Fighter is my word for 2018. 

I got my Mitochondrial Myopathy diagnosis, along with brain surgery. I felt like I was just fighting everything coming at me this entire year. My mobility was a big struggle this year. It was all terrifying. I worked full time this whole year.

Surviving is the word that comes to mind for 2019. 

You know how they say "thrive, don't just survive." Well, I was surviving as best as I knew how. I left my dream job, no longer able to keep up mentally. I'm diagnosed with chronic migraines and setting into using a wheelchair any time I'm out.

Joy.

I know that sounds so strange given what happened to the world in 2020. But for me it was validating seeing everyone's lives change so dramatically like mine had. It also brought us much closer as a family. Our son was living with us and we made a lot of moments of happiness this year. 

Content.

In 2021 I felt like I was really settling into my new life. I built up my core medical team and started finally feeling my symptoms being more managed. I felt much less scared than I had in the past. 

Weary.

Although I have many blessings in my life, I remember just being completely wiped out this year. I would try to have company or go to someone's house only to have it leaving me totally drained. I'm so fatigued that I can't make even the most basic decisions.

Miraculous.

This year I learn about my processing issues of long-chain fatty acids. I drastically change my diet and am mobile again. I still have a lot of fatigue and some atrophy, but I'm able to do so many things I thought I never would again. Everything is exciting and new again.

Thriving.

I'm working on my fitness and physical health. I still struggle with my chronic migraines and fatigue, but I'm able to do so much more day by day.

Insanity. (In a good way.)

I change my diet even more. I'm focused on short-chain fatty acids, gluten free and vegetarian. I feel even better. I can go some days with no nap now and when I do nap it's for much shorter a period of time. My strength and stamina is finally up to pre-illness levels.

I'm so excited to see what the rest of this year and next year hold. I'm working on my food addiction, so hopefully I'll make some progress there soon.

My Puppies

We've had dogs going on 22 years now. We first had "Snack." A beautiful yellow lab, basset hound mix. She was so sweet, gentle, kind and calm. The perfect "starter" dog and so great with little kids. My dream of having a menagerie of animals was soon crushed by my husband's insistence that we only ever have dogs. I was able to sneak in the odd fish now and again. But aside from two cats when our son was very young, we've only ever had dogs. 

When Snack got a little older I decided I wanted a puppy. I'd never had a puppy before and my hormones were going crazy. My husband said "no." I got a puppy. He lived with it. "Sweetie" was four months old and the only puppy at the pound when I got her. The same pound we got her sister from years before. They didn't know what breed she was. I just knew that I loved her and she needed us.

She grew into a beautiful whipped rat-terrier mix. (Best as we could tell.) She was very sweet tempered and we loved her every day of her life.

Snack (left) and Sweetie - November, 2007
Our family Christmas card photo

Next Came Lulu. My husband heard of a basset hound being dumped in our friend's backyard. She couldn't keep the dog and was looking for a new home. Snack had been gone for a while and John wanted a basset hound. It seemed like destiny. Lulu the basset was ours before the end of the day. 

     Lulu with our son 2013

Lulu and Sweetie kept us laughing for many years with their antics. Lulu was like having a stubborn, slobbery donkey. Sweetie became my close companion when I became ill and too sick to work. She loved wheelchair rides and naps with mom. 

(Lulu - With Sweetie behind her. April 2013)

We lost Lulu too soon due to a back injury. Sweetie grew old and cranky with us. 

Sweetie was with us till around 13. We took to calling her "Kreacher" after the Harry Potter house elf. Because she would walk by any room we were in, look at us with a disgusted look on her face and keep walking. "Filthy muggles" we'd mutter in her voice. Canine dementia can be amusing if you try hard enough. We had her for her long, love-filled life. 

Sweetie towards the end of her life.

2021

We were determined to take a "break" from dog ownership after Sweetie passed on. We wanted to travel if possible and not take care of a needy animal for a bit. That only lasted a few weeks. It literally felt like the heart of our home had died. It was empty, cold, lonely without a dog.

I was looking around online at different pets and I saw Max. The second I saw his picture I just knew he was my soulmate. We hadn't had a boy dog before, so this was a new adventure. Three other couples had already applied for him. He had been rescued from a hoarding situation and was at a foster home. I beat everyone out with my determination and commitment to him. I just knew he was our boy.

Max and I in our wheelchair days.

2022

2022

Two years later his sister Margo joined us. My muscles had improved and we were talking about getting a second miniature pinscher now that Max wasn't going out with us as much as before. I saw a beautiful female listed online as needing a foster. I commented that I "hope she finds one soon." Almost immediately I received a phone call from the organization. It was the same one we found Max on. They wanted to know if we would foster her.

They were desperate as she was currently in an over-crowded kill shelter and had been there for THREE MONTHS!!! I was also told she was pregnant. Oooooh no. But my husband and I talked it over. We couldn't leave her there. So we agreed to take her. The rest is history. She was officially ours three months later. Through kennel cough, immunizations and a spay surgery. Luckily they were wrong about the pregnant part. I couldn't have been more relieved.

January 2024

Who could say "no" to that face?

I will spend the rest of my life trying to right the wrongs that have been done to them both. Owning a miniature pinscher is like owning a toddler. They are very smart, stubborn, unpredictable and hilarious. Flustering, but they make me laugh all the time. They both came to us with substantial trauma. Margo more than Max. Before being in the pound for three months she was on the street. That's all I know of her story.

It has take a long time to soften her hard edges. But with love and time she has grown into an affectionate love bug. Both of my dogs adore the sling and being worn. Both love treats and being buried under blankets pressed closely next to me.

The older I get the more I dote on my dogs. They are my "fur babies" and I can't imagine my life without them. Each time I loose one my heart breaks even harder. But the love and joy they bring to my life makes all the heartbreak worth it. And they deserve all the spoiling I can afford to give them. 

Margo on the left and Max.

Yes, these are the same dogs.

They love being in my mom's Jeep.

And all the treats she gets for them.

So loved and spoiled.

August 2025