Why Should I Care?

 

My necklace is a heart with "myself" in it.
A birthday gift from my man.

I love it. 

 

My mitochondrial disease affects me in many ways. The biggest is muscle pain, fatigue and lung issues. My neurologist seems to think that my immune problems and neuropathy are un-related to my mito. Go figure. The neuropathy could be from the TB treatment. Isoniazid for 9 months. Or it could just be from some kind of bonus auto-immune chaos. 

 

My point is when my mito disease hits other areas that are less important, like my skin. Why should I care?

 

I thought my "vagina neck" as I fondly call it, was just from aging. My husband would tease me that it bothered me. My mom didn't think it was from aging at all. When she saw this picture of me she expressed some concern and challenged my saying it was just from age...

 

 

Do you see it?
Total vag neck.

 

I'm also getting a little jowlie. So I did some investigating. It turns out she was right. Mitochondrial disease affects the collagen and elasticity of the neck, so sagging like that is part of the package. 

Muscle Weakness & Anatomy: The neck muscles, specifically the platysma muscles, can weaken and separate, causing prominent vertical bands. The position of the hyoid bone can also determine how much skin sags.

Muscle Weakness (Myopathy): Many mitochondrial diseases cause mitochondrial myopathy, leading to muscle weakness and atrophy (shrinking) in the neck and throat area. As the platysma muscle weakens, it loses its ability to hold neck skin taut, contributing to a sagging appearance.

Decreased Collagen & Elastin: Mitochondria provide the energy (ATP) needed for fibroblasts to produce collagen and elastin. Mitochondrial dysfunction leads to a "biological energy crisis," resulting in slower collagen synthesis and thinner, less elastic skin that sags more easily.

Mitochondrial Disease can contribute to the appearance of a saggy "turkey neck" by accelerating skin aging and weakening the underlying muscles. While mitochondrial disorders primarily affect high-energy organs like the heart and brain, they also impact the skin's ability to maintain its structure and the neck muscles' ability to provide support.

Apparently there are some exercises you can do that could help. Or I could just wear scarves. Or I just could not care. I remember last summer it getting better with swimming. Considering we're talking about re-joining our gym in a few weeks maybe that will help? Or should I even really care that much.

 

 

I'm My Valentine

 

A story just for me...

I once lived inside a life that made sense.

I had worked for years — through training, supervision, self‑doubt, and grit — to become a therapist. Not just in title, but in identity. I had finally reached the place where my skill matched my purpose. I was building a career I had earned with my whole self. I was helping people. I was steady. I was proud. I was beginning.

And then, without warning, the ground underneath that life gave way.

Brain surgery.

Mitochondrial myopathy.

A body that no longer behaved like the one I had trained in, lived in, trusted.

The loss wasn’t just physical. It was existential.

It was the loss of a rhythm, a role, a future I had already stepped into.

It was the loss of the version of me who could work full time, who could hold space for others without worrying whether my own body would collapse.

For a while, it felt like the old me had died and the new me had been left behind to make sense of the wreckage.

But that isn’t the whole story.

Because the part of me that became a therapist — the part that listens deeply, understands nuance, sees people clearly, and holds complexity with grace — didn’t disappear. It didn’t get cut out in surgery. It didn’t dissolve with the diagnosis.

It’s still here.

It lives in how I think, how I relate, how I make meaning.

It lives in the way I navigate my own suffering with honesty and insight.

It lives in the way I care for others, even now, even with limits.

My life didn’t end.

It changed shape.

The old life was linear — training, mastery, career, momentum.

The new life is cyclical — energy, rest, adaptation, creativity, resilience.

The old life was built on strength and capacity.

The new life is built on wisdom and precision.

The old life moved outward, toward clients and systems and goals.

The new life moves inward, toward truth, embodiment, and gentleness.

Both lives are mine.

The therapist I was is not gone; she is integrated.

She is the foundation I stand on, even if I stand differently now.

She is the one who carried me through the hardest years, who built the skills I still use, who earned the identity I still hold.

And the person I am now is not a lesser version — she is a transformed one.

She lives with a body that demands honesty.

She lives with limits that require creativity.

She lives with a clarity that only comes from surviving what should have broken her.

I am not living a replacement life.

I am living a true life. One that honors the before, survives the rupture, and grows in the after.

My story didn’t end when my body changed.

It shifted into a new chapter, one that is still unfolding, still meaningful, still mine.

Don't Just Get Clean

I was watching an episode of Queer Eye the other night and a topic came up that resonated with me. One of the people on the show said something to the effect of: When you're showering, don't just have the intention of "getting clean." Rather see it as a time just for you. Honor yourself. Make it an experience and take time to connect with your body.

Since I view my body as a betrayer, this is very hard for me. Medical trauma is very real. I thought about what I had heard. The person on the receiving end of this advice was also a big giver to other people. I reflected back on what I think of my body and how I have treated it since becoming ill and I saw something interesting.

In the past I would shave my head because it was easier to just not think about or fuss with my hair. (Or because I was too weak to shampoo my hair.) I don't wear makeup often because I don't like the feel of it. I didn't wash my face (outside of a shower) because my complexion was clear. I just stopped spending time on my looks. This all coincided with my illness.

Yes, I would go back and forth on coloring my hair. I wanted to go natural, but then I would feel like I looked old and sick and I would switch it up again.

But something recently changed.

I can't pinpoint it exactly.

Firstly it could have been my wonderful birthday party. Being around such magnificent women and being restored with feminine energy. It really was a magical evening.

Secondly it could have been me learning about animal testing and the cruelty in the beauty industry. Everything from our shampoo, deodorant to my face products were from evil companies. I vowed to do better this year.

Slowly I made a shift. 

I started by learning more about what "mature" skin needs and the changes that happen with age. I'm growing my hair out again (though I'm done with color... for now.) I tried out a brand that I'd used a few of their products in the past and liked them. They are local, woman owned, Vegan and cruelty free. I'm super happy with what I've bought so far.

Next I made a new skincare routine for myself. I do it every morning and every night. It is some special time just for me to relax and meditate. I'm trying to take extra good care of my eyes to prevent future styes.

I have a very simple makeup routine that doesn't feel gross on my skin. Again, using natural cruelty free brands.

I'm trying to "feel into my skin." Not just dissociate and "get clean." 

Grief

I shared with my husband this weekend that I don't feel like I've ever properly processed what happened to me. Even though it was about seven years ago now. At the beginning of this blog. 

When I look back it feels like one second I'm at the height of my career. Helping people and making good money at the same time. Putting to good practice everything I learned, studied so hard for and sacrificed to make happen. Then the next second I feel like a vegetable whose body completely betrayed her. Betrayed me.

It wasn't so fast as it feels. But the impact of it all was nothing short of a wrecking ball crashing through my life. Medical bills, new equipment, tons and tons of tests, endless amounts of pills and drugs to try and doctor's appointments. 

Each day was a new hell of "what can I not do now?" I spent many nights crying and seriously thinking death would be better because of the pain. That was before my expert team figured out what medications I need to function. 

I still feel like I'm moving in slow motion. That everything takes enormous amounts of effort. And it's all invisible to everyone. Even those closest to me. I feel overwhelmed and exhausted by the smallest task. I minimize my pain and how hard everything is for me. I'm not really sure why?

 
Maybe I want to still be seen as "strong?" Maybe it feels like I've lost some control or agency if I don't push myself? I'm an expert at "keeping calm and carrying on." But that doesn't leave much space for the reality of things or to process loss. 

My husband had a good suggestion that I pick a week next month and only do what I want to do. Have my own "staycation." He said maybe doing more art will help me process things more. I thought that was a great idea.

I do get a lot out of my art and being around family. I think it's more being out in the world that's the problem. Expectations that I put on myself. I push myself a lot. I'm trying to notice more when I need to stop and rest.

Making an Effort

I'm realizing there's a very good reason why most disabled and chronically ill people complain of loneliness. It's because friends don't like to be the one to make plans. I'm not sure how that works if EVERYONE is like that. Actually I am sure. It doesn't. Friends fall by the wayside until they vanish completely.

My husband is my best friend.

Of course there are the rare exceptions, but those tend to be family members. It's the very rare friend who will be the one to make the effort to keep in touch and suggest plans.

My mom is my best friend

I have also come to terms with being that person with my friends. If I want to see them EVER than I have to be the one to text, call, suggest SPECIFIC plans... (that's the key, they have to be specific.) And there are a lot of people in my life whose company I enjoy enough to make that effort. And those who I don't.

The person I call my best friend is one of those people who would make an effort even if I was ill and couldn't do it myself. That's one of the reasons I say she's my "best friend." She's reliable, funny, fun to be with, smart, a feminist, doesn't hound or smother me, makes plans and asks me to join her. All qualities I admire. 

My best friend and my mom helped throw me the best birthday party ever.

She's also anxious as hell. Complicated. A contradiction. Traumatized and stubborn. Not all bad qualities. I think of it like a dessert. If it was too sweet I couldn't have much of it. People need balance. 

I also admire how important her heritage is to her. She's half Samoan and half Italian. Funnily enough her Samoan half seems more important to her. But I get it. I value my Italian heritage even if it is much less than my English or Irish genes.

I find now that I have my sisters in my life and their very large families it leaves less time to spend with my friends. But I will always make time for those who enrich my life.