Way back when there were dinosaurs

About 20 years ago I decided to take up running. I was a healthy 35 year old. All of my in-laws ran at the time. And somehow I got sucked into the magazine Runners World. They had really excellent articles. So I thought to myself if all these people can run there's no reason I can't too.

I went to our local running store (yes, we have one of those) and was "fitted" for personal running shoes. They were so comfy. I wore them for years. Once properly outfitted I gave it a try.

At first I fast walked not very far. Then I did a little jog. Then came my Fitbit and headphones. Because I was getting serious. I was a successful jogger! Next I worked on my form and finally became a runner. I had other women friends who ran too. We decided to sign up for a 5K.

Here comes the interesting part.
The whole time I was running, even before the 5K, I noticed that my right hip would hurt for no reason. I tried everything to get it not to hurt. Stretching, slowing down, favoring my left side... but nothing helped. I even stopped running and just burst into tears one day. What was I doing wrong?

The day of the 5K came. I even made us all matching hats. You can guess what happened. My friends (at my urging) left me in the dust. My hip started to feel like it was on fire. Every second of that run was torture. And I had no idea why.

I had practiced. I had stretched before the race. I wore my "special shoes." I read the magazine. I did everything right. 

One of my friends who had finished the race actually circled back around to encourage me to finish. I did, but I walked across that finish line. I got passed up by a heavily pregnant woman and a person dressed in an inflatable pickle costume. I got passed by a pickle.

I was humiliated that my friend (wearing jeans and converse shoes) came back to get me. I hated my body that I felt had completely betrayed me. Looking back I wonder...

Could it have been my earliest sign of mitochondrial disease? Does it go back that far? Even further? My mom says I was a very sleepy child. I remember falling asleep in class all of the time. In high school I would go to the nurses office during PE just to get a nap. Eventually she said I couldn't do it anymore.

Maybe I had mitochondrial disease my whole life and it just super worsened with TB and my brain tumor? Who knows.

I do know that when I walked the dogs today I had that exact pain. Now I recognize it as a feeling like my hip muscle just can't hold my hip bones into place. It feels very weak and painful. That exact same pain as 20 years ago when I tried to be a runner.

After that 5K I stopped. Something I don't regret. My body obviously isn't made for running. It's made for eating peanut butter and chocolate ice cream

 

2026 Has Been Rough

Last week my mom was in the hospital for her heart. She seems to have a medical crisis every year, but this one was by far the scariest. Well, that's not true. In the moment they are ALL terrifying. But this one was the closest to death I think she has come. I was sure she was going to die. I'm not ready for that yet. Not ready to lose her from my life forever. But will I ever be? I'm sure no.

This year has been crap for me medically as well.

 

 Eye infection in January. Starting the year off with a BANG.

 

Bad pink eye in February. Yes, it spread to the other eye. 

 

Urinary Tract Infection (UTI) in March. The fun just keeps coming.

Hives that pop up after compression, touching grass, hay or my dog's claws. Or just because.

 

My fingernail strangely lifting up off my nail bed (2 of them.)

In April I had another round of pink eye. But I didn't take any pictures this time. This will have to do...

Now it's May and I woke up with thrush yesterday. Fuck my life. 

This is a great reminder for me.

 

I had some labs done recently since I told my doctor I've been obviously have immune problems. 

She's referred me to a rheumatologist. I haven't seen one since 2018 (when I also had positive labs) and it wasn't a great experience. They thought I had Rheumatoid arthritis (RA), but it ended up being Mitochondrial Myopathy. I was put on medication that just made my symptoms much much worse (plaquenil) for RA. So needless to say I'm nervous about it.

 

Next week I'm seeing a neurologist for the second opinion about my "silent seizures." Does she agree that I have them?

 

Then comes the ENT to review treatments for my right year that likes to plug up on me for days on end when the pressure changes.

 

Also the gynecologist to talk about possible HRT to help my post-menopausal symptoms.

 

In the meantime I'm hoping to get my referral for Botox for migraines. I've been fighting with them about that since November. 

 

And people like to ask what I do with "all my free time." The answer is I don't have any. 

I feel like I don't even have enough to do art, When I'm not doing all this I'm trying to keep up with my precious pups, the house or with the people I love.  Of course I also spend a huge chunk of my day unconscious.

 

So yeah. 2026 has been kicking my butt.  

 

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 melting and I can't get up

Oh LORDIE! Summer is here. We've had weather in the high 90's already. Multiple days in a row. Something I've learned about my mitochondrial disease is that heat affects me in a major way. Too cool and my muscles cramp and spasm. Too hot and I very quickly wind down and have zero energy or muscle strength. Jeeze. win-win. Strangely humidity doesn't seem to effect me as much as it did when I was healthy and able bodied. 

It's not all fun and games when I'm too hot or too cold.

I was just outside talking to someone for about 15 minutes. It's exactly 90* outside right now. I literally felt like I was going to die.

Some great tips to keep cool that I've recently learned are:

• Vicks Vaporub (menthol gel) or peppermint oil on your skin will help you cool off fast when combined with a fan.
• Keep ice or a cool towel over your heart and on the back of your neck.
• Keep an electric personal fan on you.
• Wet a scarf and wrap it around your head.
• Stay inside where it's air conditioned. Hah!

IT BURNS!

I'm going to have to learn to turn people down for outside activities during the summer unless at night or involving a swimming pool. A new area to advocate for myself. And like most things going on with my body, this temperature sensitivity seems to get worse every year.

 

Looking Behind and Ahead

There's a saying in the field of Psychology that "Looking behind too much will cause depression. Looking ahead too much will cause anxiety." I think that's true, but looking behind is also how we learn.

I've had more than a few "AH HAH" moments from looking behind. In fact, I recently had an important memory.

In 2011 (about 14 years ago) I was trying to get into jogging. I wanted to jog a 5K. It was my goal. I signed up with a few friends to do it together. But I quickly discovered I had a problem. No matter how much I stretched and trained my right hip remained tight. It would cramp up on me even on the shortest, simplest of runs. I got new shoes, supportive leggings, tried many different ways to solve the issue, but nothing helped. 

Me in 2011

Yes... I'm stomping grapes with my bare feet.

The day of the 5K came and I ended up walking it. Even that was hard and painful. My friends finished quickly and then one circled back to walk with me and cheer me on. I cried a lot that day out of frustration. It's the first time I can remember my body just not being able to do something that I felt it should.

I had completely forgotten about that time until now. It seemed so easy for other people and I found it impossible. I now believe that was the start of my mitochondrial disease. That it stretched back that far. Now I live with that feeling of frustration pretty much every single day.

2025

Me sitting on my butt NOT grape stomping on a platform.

My right side has always been my "problem" side. My right hand is weaker. My right ankle cramps and I have drop foot on my right foot. It makes complete sense that the cramping I was having in my right hip was the very beginning of my muscle problems.

I have an appointment next week with my pain doctor. I cancelled the last one out of fear. This time I'm keeping an open mind and what to hear what she feels my options are.

I'm still working on this lesson.

Assessment and Plan

I am one of the few lucky ones.

I had my mitochondrial disease diagnosed fairly fast. I was believed and not gas lit by either my primary care doctor, nor my neurologist. I quickly worked my way up the neurology ladder until I was seen by the Chief of Staff himself who was the one to recognize my symptoms and diagnose me, even before I had my muscle biopsy and genetic tests. 

I also live in a place with world class health care. I am incredibly fortunate.

I have been seeing my "Muscular Neurologist" Dr. Lisa Williams at the UC Davis PM&R Clinic (Physical medicine and rehabilitation) for about six years now. At first she saw me every three months, now we check in every six months.

My favorite thing about her is that just like my handyman, she always has a plan. I come to her with a list of concerns and she comes up with a plan. I just saw her yesterday and this is my plan for 2025...

 Assessment & Plan

Mitochondrial Myopathy

Exacerbation of fatigue and severe weakness after flu vaccine. Generalized muscle fatigue without pain or cramping. Right side weakness reported. Stable with dietary modifications (medium chain fatty acid).

-Continue dietary modifications.

-Continue CoQ10 300mg three times a day.

-Continue Amantadine 200mg daily (refill 90-day prescription).

 

Dysphagia

Increased difficulty swallowing, particularly with soft solids. Choking reported. Last swallow study was normal. Referral to ENT for repeat swallow study.

-Continue monitoring and follow up with ENT for swallow study.

 

Migraines

Managed with new medication after discontinuing Botox due to side effects.

-Continue current migraine medication and follow-up with neurology.

 

Asthma

Increased symptoms over the past six months, potentially due to poor air quality.

-Continue current asthma management.

 

Neuropathic Pain

Severe, particularly at night. Pain is diffuse, intense, and worse with movement. Pain is primarily muscular. Current medications (Lyrica, Duloxetine, Amantadine) provide some relief.

-Consult with Dr. Chinar Sanghvi regarding potential innovative treatments for pain control such as buprenorphine or IV ketamine.

 

Impaired mobility and ADLS:

Foot Drop

Managed with Ankle Foot Orthosis (AFO) brace and soft brace for shorter distances.

-Continue use of AFO and soft brace as needed on the right. Strength stable today.

 

General Health Maintenance

-Consider low-intensity exercise classes for neuromuscular exercise.

-Consider use of a cervical pillow for neck pain.

-Follow up with sleep study results and potential need for CPAP.

No way am I going back to using a CPAP machine by the way. I get it for people who really need them like my husband. But I don't fit that category. 

Dr. Williams cares about my quality of life. She also learns a lot from me. She had another patient with similar genetic mutations try a "short chain fatty acid diet" with great success. I'm pretty sure I'm a paper somewhere.

My own plans this year include knowing my limits and paying better attention to them. Not pushing myself to "do all the things" and just try and be as healthy as I can be.