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.

What IS Best For Me!?!?

Today is week 3 of the Vegan diet. I can already tell it isn't working for my body. I feel hungry, weak and tired. Yes, it could just be me. It could be that's as good as it gets? My stomach is feeling much less bloated, but it's also less full. I stay full for a shorter period of time then before.

"Are you eating meat again yet mom?"

My mom had surgery this morning and my cravings were out of control last night. I seriously wanted to go get a hamburger after taking her home. But I didn't. What I did do was go get an organic gourmet turkey breast sandwich at our local deli counter. I thought it was a good compromise. I felt better right after eating it. Satisfied and full in a good way. 

I want to try eating a small amount of animal protein again.
Turkey and chicken breast
Goat and sheep cheese
Eggs

This hummus toast was delicious.

I think the "short chain fatty acid" way of eating is where I had the most success. That's what I changed to when I stopped needing my chair every time I left the house. I can also combine it with foods best for my mitochondria. Seeds/nuts, berries & leafy greens.

I'm really burnt on Asian dinners. But the lotus root in my stir fry was yum.

I did some more research today and learned that a strict Vegan diet doesn't always support the metabolic stability that I need. I also learned that the two food groups that make up short chain fatty acids (SCFA) are "soluble fiber" and "resistant starch."

Resistant Starch: Is a type of carbohydrate that resists digestion in the small intestine. Because it isn't broken down early, it travels to the colon where your gut bacteria ferment it into short-chain fatty acids, especially butyrate - the SCFA most linked to mitochondrial health, gut repair and metabolic stability. All good things I want.

Soluble Fiber:  Fiber that dissolves in water (so your small intestine) and forms a gel-like texture. Your microbiome ferments it into acetate and propionate, which support metabolic regulation, blood sugar balance and gut health. It feeds the beneficial gut bacteria, reduces inflammation and enhances SCFA production. 

Types of resistant starches to eat:

• whole grains
• seeds
• beans
• green bananas (or powdered green bananas)
• raw potato starch
• sweet potatoes
• sorghum
• millet
• quinoa
• starchy foods like rice, potatoes, oatmeal that are cooked AND COOLED! Who knew? They need to be cooked, then cooled, then either eaten cool or slowly reheated. 

Best sources of soluble fiber: 

• apples
• citrus
• mushrooms
• onions
• garlic
• carrots
• oats
• psyllium husk
• berries
• brussels sprouts
• sweet potatoes

When these foods are combines in meals I get a broad spectrum of SCFA, which is IDEAL for my gut health and my mitochondrial health. Especially if I add on some fermented foods.

Animal proteins only matter as much as my own reaction to them (I think I'm sensitive) and their fat content. They support my metabolism and energy levels, but they have nothing to do with SCFA production. Facinating. I wish all of this was taught to everyone. 

All or Nothing

My mom and I were talking yesterday and I mentioned how if I'm going to change a habit I am "all or nothing" about it. Doing things a little bit at a time never worked for me. Case in point. My wonderful husband and I have been together 33 years. I was pregnant within 3 months of dating (the second time around.) SURPRISE! And we moved in together two weeks after I found out. We were married less than a year later. All or nothing. And that worked out just fine for me.

So I don't just start eating one Vegan meal a week. I go full Vegan. It's going great.

I don't just "watch my spending." I stop spending completely. Well, now that Target's off limits (for supporting ICE) there goes a giant will to spend. I'm also in the "purging" phase of the year. Cleaning things out. Giving away. Not the acquiring phase, so that helps. 

A beautiful orchid I brought back from the dead.

A friend gives me her dead orchids and I bring them back to life.

Honestly I really want for nothing. I have a closet literally bursting with beautiful clothes. I have shoes that keep my feet comfy and ankles stable. I have a travel wheelchair, big wheelchair and walking sticks. I have a stunning new car. A warm house to keep me safe. Plenty of good food to eat. Books to read, TV to watch, a soft bed to rest in. More than enough blankets to wrap up in. Hot water for bathing. You get the idea. In many parts of the world I would be considered RICH.

Most of all I have many people who love and care about me. That feels amazing. So no... I don't need to go to Home Goods and get that Valentines placement. I want to go to the pottery studio and create something that didn't exist before I made it.

I don't want to go to Costco and buy new pillows. I want to get berries to feed my mitochondria. I want to walk my dogs, hug a tree, watch the birds, build a birdhouse, tend my garden, hug people I love. All free pleasures in life. I'm all in.

Feelin Groovy

My eyes are finally better. It took the eyedrops, ointment and an antibiotic to finally help. Jeeeeze. Something is definitely up with my immune system. But more on that later. 

What I really want to talk about is how great my Vegan diet is going. Here's the thing. I was Vegan for two years solid a very long time ago. My first year in grad school actually. I went Vegan for emotional reasons. Because I love animals and care about their welfare. I also love the planet and I know how harmful factory farm meat production is. 

Oatmeal with pumpkin seeds, flax and pumpkin pie spice.

I also had blueberries, but I took this picture before I added them. 

It was very delicious and filling.

As I said, I was Vegan for two years. Then it just stopped working for me. I was craving meat all the time. I caved and had a burger and then just slid back into a regular American diet.

This time I'm going Vegan for me. Yes, for the animals and planet too. But number one for me. That's my theme this year. Me first.

I don't think my body does well processing animal proteins. I've suspected as much since first going on the "short chain fatty acid" diet where I cut out a ton of animal protein. 

I used AI to help me come up with a meal plan tailored to meet the demands of my mitochondria. Foods that are top tier helpful. Shocker... they're all Vegan. Leafy greens, nuts & seeds and berries.

This was one of my favorite things I've had so far.

Cubed and roasted sweet potatoes on the bottom. Black beans, mixed baby greens, tomatoes, avocado, pumpkin seeds and a simple lemon oil dressing. Delicious!

I wanted to know if I cut out ALL animal protein if my body would do even better?

I'm on week two now. Last week I was down for the count because of my eye. Now I'm on major antibiotics, so it's hard to tell. My energy is about the same, but my muscles do seem better. What has made a huge difference is my stomach feels much better and my bowels are starting to become regular. Again, that could be from the antibiotics too, so I can't say for sure yet. 

I've been drinking a ton of lemon water. 

I replaced my morning coffee with Matcha, honey and oatmilk.

Here I'm having a simple smoothie with pea protein, oat milk, blueberries, a banana and spinach.

Ethically I feel much better. My heart feels lighter. There's so much ugliness in the world right now that I feel strongly about spreading love, peace and compassion anywhere I can. And not contributing to the suffering of animals through thoughtful consumption of not just food, but anything that uses and abuses animals is important to me. Very important.

My treat. Anything above 70% dark cocoa.
This was very delicious. 

I'll report back how or if the Vegan diet is helping my mitochondrial disease symptoms regularly. 

Killer Conjunctivitis Strikes Again!

C'mon man.
The year has just begun and already we have my mom in a medical crisis, my best friend has lock jaw and me with another eye infection. Really? Is this how we're gonna play 2026?

Yup. I noticed I was getting a stye on Saturday. By Sunday it was full blown puffy. I did a Teledoc visit so I could get eye drops first thing Monday. Tuesday my ophthalmologist sent in some ointment too. Today is Wednesday and I think it's finally turned a corner. 

Right eye this time. Three sweet months since my last infection. Here's what it looked like yesterday morning.

I can feel it in my ear too!

Sick with no Taco Bell. AAAAAAAAAAA!

You can see that yesterday it started spreading to my left eye. Despite me changing my pillow case and blanket daily and using the tea tree wipes on it that my ophthalmologist's recommended. My immune system just suuuuuuuucks.

I think this would be no big deal in anyone else. But in me my whole body shuts down. And it's very hard to get it under control. I didn't ask for oral antibiotics this time because I feel confident that I CAN fight it off myself. It will just take a little bit.

Meanwhile I'm doing Ofloxacin Ophthalmic Solution 0.3%, two drops four times a day in both eyes and Erythromycin Ointment 0.5% in the morning and at night. I guess that is an antibiotic ointment. Hot compress, cold washrag and rest. Afrin nose spray for my ear.

I will say though, this is bullshit.

My ophthalmologist (who I JUST SAW) is now referring me to a different one. I'll see him at the end of March. Progress at a snail's pace. 

I wonder if swimming in a chlorinated pool regularly would help? Hmmm. Something to consider. 

But if it means not sleeping with my dogs forget it. I'd rather be on antibiotics the rest of their lives.

Taking Matters Into My Capable Hands

My very first blog post ever here was about "Plan Kick Ass." It was what I called a plan to rid all toxins from my diet and radically change my habits for the better. It has come and gone through the years. Typically with food addiction taking the drivers seat and veering me back into old habits. 

My dinner the other night. Cheese tortellini with gorgonzola alfredo sauce and roasted broccoli. It was even more delicious than it looks.

Cheese, butter, sweets, carbs... are all very hard for me to resist. Eight years later I'm ready to try again. But this time I have AI to help me.

With the help of Hal (what I call Copilot on my phone) I made a complete list of all the foods that are the very best for mitochondrial health. I then formed a meal plan around those foods. It is a complete, Vegan, protein and antioxidant heavy diet. No animal products at all. 

Matcha tea instead of coffee every morning.

What it also lacks are replacement foods. No Earth Balance instead of butter. No Impossible Beef instead of burger. And sadly, not even some fake buffalo "chicken" instead of real chicken on my salad. Nope. Whole grains, beans, fruits and vegetables. The closest thing I get to eating anything "fun" is dark chocolate. This... is... going... to... be... hard.

My research added to my 2026 journal.

BUT. If it will help me lose some weight to help my strength and mobility. Heal my mitochondria and allow me to have more stamina and less fatigue? Well... There's very little I wouldn't do for that.

First comes food. Then hopefully if I'm feeling stronger and more energetic I can increase my activity. Keep your fingers crossed for me. Welcome to 2026. My body won't know what hit it. 

Happy New Year!

Seizure EEG

So I had my EEG this week. I don't recommend them. The flashing light and hyperventilation were a lot more taxing than I had anticipated. It left me exhausted for about 24hrs. But when you stop and think about how much energy goes into forcing yourself to hyperventilate for three minutes... Well... I shouldn't have been surprised. 

Collage and pictures courtesy of my mom/driver/personal assistant/fairy Godmother

I'm constantly shocked by my lack of stamina. Even this many long years after my diagnosis. I think that could be some kind of body dysmorphia. I see myself as far far far more capable than I am. Always. In any situation. "Sure I can lift that couch by myself. Absolutely I can walk a mile over rough terrain. You bet I can swim across that canal. I'm invincible!" Or maybe I'm just hugely optimistic? We'll call it that and not pathologize.  

However, I digress.

I did the EEG and the report came back normal. My husband joked that "Nothing about you is normal." But I have paperwork saying that my little brain is. YAY!

A normal EEG doesn't rule out Silent Seizures. Bummer.

Now I'm going to just hold off on taking anything for seizures until I talk to Dr. Williams, my muscular neurologist at the end of this month.

One invasive medical appointment done. Nothing else till Botox for migraines hopefully resumes next month. IF my insurance approved it.