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!

What Matters Most

Time is a finite resource. It's vital to make the most of it. And I don't mean I should be rushing to get as much done as possible. But I can use some help prioritizing what is most important in my life and spending my time there.

I'm feeling medical burnout. Even though I have an EEG scheduled for tomorrow to check into the whole "You're having silent seizures" news. This year I really don't want to prioritize medical care. Endless appointments where everyone says the same thing and it doesn't help much. 

I'm also feeling done with spending time with certain people. Like my in-laws. As much as I love them, I just don't want to spend time with them. I don't particularly enjoy their company and they don't have much to add to my life. In fact, they feel like work.

The only person who is work who gets to stay in my life is my son. That's it. I have no time or energy for anyone extra.

I spent a lot of time with friends this year. More than I can remember for ages. It was helpful to weed out who adds to my life and who doesn't. Everyone has hard times and good. I don't expect rainbows and sunshine constantly. But I want an overall positive reciprocal relationship with my friends.

So with all of this in mind. Here are my priorities for how to spend my time this year.

2026

1. Taking care of myself. Mentally and physically. Yoga, swimming, dancing, moving, sleeping. Doing what I need to do to feel good and be happy with myself.
   
   
2. Spending time with my mom, my dogs and my husband. Enjoying them and just living life together.
   
   
3. ART. Being committed to spending time on my art, whatever that looks like. Clay, doodles, painting, henna, crafting, drawing...
   
   
4. Live my values and drop people who don't share them. Animal welfare, feminist issues, slow fashion, commitment to people I love. All of these things matter a lot to me. I don't have time for people who live their lives blindly.
   
   

My mother just threw me the absolute best 53rd birthday party. It was women only and filled with such positive energy. I could tell we were all very thirsty for such an occasion. It was also an excellent way to start off a fresh new year. Showing me the potential of all of the women in my life and how powerful we all are together.

More of that this year please!

TWO CAKES!!!

What 53 looks like

Disease Management

There are many ways that I have learned to manage my disease over the years. Online resources have been hugely helpful. Back when I was on Facebook, belonging to a support group there led to some helpful suggestions.

This website has also been a fantastic place to gain insight and knowledge, even on topics like sex as a person with Mitochondrial disease. My Mito.org

Of course my mobility tools have been key. The unpredictability of this disorder can cause me a lot of anxiety. I don't know how long I'll be able to stand or walk on any given day. Keeping tools in the car makes that anxiety much less and sets me up for a successful outing or vacation. 

The biggest way I manage my disease is with medication, supplements and rest. Electrolytes too. I used to try to push myself through a day without rest, only to find I'm then over-tired at night and have a lot of trouble sleeping. If I take the time to rest I have a much better evening and better quality sleep at night. Strange, I know.

My medication is pretty dialed in now. It has been for over a year. My migraine management is the only thing that changes occasionally. 

Of course there are other things that "help." Like making meals simple. I typically just have a protein bar for breakfast. Even though my husband says that's not a breakfast, it's a snack. My favorite go-to dinner is a chopped salad kit (easier to eat than a normal salad) with faux buffalo chicken on top. 

Keeping positive and managing my mood is important as well. Talking with my husband and other family or close friends is therapeutic. I don't keep things bottled up anymore. Managing my stress is also helpful. 

Attending regular appointments to measure things like my breathing, heart and neurological symptoms is a must. I have from two to four appointments with my muscular neurologist a year. Four with my migraine neurologist (though I'm in the process of seeing a new person, so there's been a massive delay with my next appointment.) I see my primary care about three times a year for various things. Then usually some kind of specialist a few times in the year. A dermatologist or gastroenterologist. Urgent care is for things like I can't get my "bad ear" unplugged and it's starting to hurt, or a I have a UTI (happens about twice a year.)

Honestly just knowing what to expect and why something is happening to me has been incredibly helpful. Like the last time I went to the ER after my flu vaccination. Now I know if that happens again what it is, what to do and what to expect. I won't just be crying my eyes out scared to death.

Managing any disease is very complicated and time consuming. All consuming really. Now I need a rest. 

Are you a mini or a maxi?

I've been a massive maximalist most of my life. But deep down inside has always been a minimalist dying to come out.

I'm a maximalist in all ways. Spending, decorating, buying clothes for my dogs, eating, loving people. It's very easy for me to go way over the top in all areas of my life. My husband will ask me if I want something now, or later? Both is always my answer. Did I want to go on a trip for our 30th anniversary or get a nice piece of jewelry? Both of course. Would I like the appetizer or dessert? Uhhhh BOTH!

See the pattern? 

Restraint, budgeting, minimalism, living withing my means, decorating within the boarders of my walls... nope. Big no to all of that.

I'm an expert money spender!

2025 is knocking. It's the perfect time for reflection and change.

1 - I want to be much less of a consumer. Both with my wallet and my mouth.

2- I want to de-clutter my environment. Donations and Ebay selling are the best way to purge.

3- I want to be more on top of my finances. As long as I'm not working (and I don't think that's changing soon) I feel I need to be more responsible about my budget.

4- Be out in nature more. 

5- Be more active with the dogs & take them out with me more. That always takes a ton of spoons, but I feel it is very worth it.

I also want to embrace new ways to self sooth that don't involve hurting myself (by over-eating or by over-spending.)

WHEW! That's a big list. Notice how "weight loss" isn't there?

When I put pressure on myself by turning my focus on that, I fail. I'm tired of failing, so I'm not making it a goal right now. My hope is by trying to do a better job of taking care of myself and simplifying my surroundings, other things will fall into place.

Happy New Year.

I wish nothing but amazing things for us in 2025.

Feeding Myself

I'm watching a show about Native Alaskans and a woman said something I love. "Everything is medicine, especially the food we eat." It's easy to forget that in today's fast paced world. I'm very fortunate not to live in an urban food desert and to have money to spend on pretty much any kind of food I choose. From wholesome organic food to junkie fast food. It's all up to me.

I have a troubled relationship with food and feeding myself. I'm really not sure even when it began. When I was younger I looked at food as an inconvenience. Something I just HAD to do. Stop playing and eat. Of course unless it was something super good like pizza. But even then I would just eat what I wanted and stop when I was full.

Something switched when I became a mom. Maybe it was eating my son's leftovers? Or eating for emotional reasons (eating my feelings.) I don't know but something changed. I began to over eat, eat at the wrong times and eat convenience foods. 

Every Friday was "treat day" for my son and myself. "Treat" meant fast food. I would pick him up from school and we would drive through the fast food of his choice. Yikes. I cringe at that now. I'm older and wiser. Sadly my now fully grown son is completely addicted to fast food. I can't help but blame myself.

But back to me.
I struggle with feeding myself. 
When and how much is a constant battle for me.

My natural setting is to eat nothing till later afternoon, then have something small. But when night comes the beast is unleashed! I love a very large dinner followed up with dessert. BOOM! More than a days worth of calories all at once.

How I "should be" eating for my mitochondrial disease is the complete opposite. Small meals with very high protein through the day. 

Then there's the ethical side of eating. At least for me.

I LOVE ANIMALS! All animals. I wish I could have a complete menagerie (and the staff to properly care for them.) Dogs especially, but seriously. All animals are wonderful. The way farm animals are treated here and in Asian countries is despicable. Really disgusting. So one of my goals for this year was to stop eating mammals.

In the past I was a vegetarian for a year and a Vegan for two years. As much as I wish I could be Vegan it's just too hard for me to get enough protein that way. I have low protein levels as it is, so I need to be careful. And when I was a vegetarian I increased my dairy (mainly cheese) to unhealthy levels. Plus I was still contributing to the cow/dairy industry which I didn't like.

I'm hoping by cutting out mammals I can find a healthy balance between what I need nutritionally and what I can do ethically. I can cut back on domestic cheese. I can eat more goat and imported cheese when I do eat cheese which is far more ethical and healthy. I will still eat eggs, but from certified humane farms. I enjoy organic free range chicken (not from factory farms) and that's a great source of protein. Fish I'm working on loving. I do love seafood, but honestly not more than once a week.

Why do we love some animals and eat others?

Beef is my favorite meat, but I just can't justify eating it anymore. The older I get the more I don't think it's very healthy for me anyway.

A healthy balance is what I'm striving for. 

Lately I've been enjoying either a protein bar or small yogurt cup for breakfast. Lunch is typically leftovers from the night before, egg and toast with a banana or a sandwich of some kind (like tuna.) Or if I'm fortunate then I'm at my mom's house and she's making me something fabulous. Like cod, baked potato and salad. I'm so lucky.

These are my absolute favorite

Dinner is still commonly my biggest meal. That's something I still struggle with. Both my husband and myself want to try and make lunch our biggest meal of the day, but it's a challenge for us. Dinner is usually fish tacos, chicken curry over potatoes or soup and quesadilla. We diversify our diet a lot with dinner. 

Dessert is something I'm working on cutting out all together. Unless it's a special occasion. I used to have a serious thing for Junior Mints. My nutritionist recommended replacing them with super dark chocolate bars (since you can only eat a little bit of them at a time.) I did and I find that I just don't want it that often. Although I'm guilty of making other gluten free goodies like chocolate chip cookie bars. But not very often.

I notice I'm not as hungry when I eat a high protein diet. My nutritionist also recommended eating a little bit of carb with every meal since it's carbs that convert protein to energy your muscles can use. I didn't know that and I had been eating super low carbs thinking it was healthier. So that's another small adjustment I made.

It would be fantastic if I could cut sugar out of my diet. I'm sure it would help with pain and inflammation. Sadly I'm addicted to my sweet sweet cup of coffee. Just one cup a day, but I need to have it sweet. I'm also still searching for the perfect non dairy coffee creamer. -sigh- I'm just a work in progress. Even at 50.

Did you know that...

• 10 Billion animals are slaughtered each year in the US.
• 99% of those are raised in a factory farm.
• Globally 80 Billion land animals are slaughtered for food each year.

This one shocked me and got me thinking...

Reflecting on 2021

 

This year has come with many gains and loses for me. I lost my beloved Nana in mid-November. She was a second mother to me. Even though someone slips from the evil grasps of pain, it's still a loss. I know she's no longer suffering. But I also know I will never see her or hear her sing-song voice again. I kept some voicemails she left for me over the last few years and I'm grateful to have them. She had such an infectious laugh. One of my favorite things about my family as a whole is that we have all maintained our inner child. I can't say that for most people.

I also lost my sweet puppy girl of 16 years, Sweetie. Which I wrote about here. My son moved out of our home in an explosive way. That felt like a loss. And I felt like I finally had time to mourn my lack of ability to work. 

But my life is never just about loss. In fact every time I have a tremendous loss (like no longer being able to work), I also tend to have a huge gain (like my mother moving around the corner from me after being in England). 

So let's talk about my gains this year. 

Right up there with getting my clinicians license is my new fella Max. I worked very hard for that license. It was the climax of my education and training. Two thousand hours of working with clients, suffering through TB treatment, a total hysterectomy, a brain tumor and the start of my Mitochondrial Disease...WOW! For Max to be just as great speaks how important he is to me.

Another bright spot of my year was how much I was able to reconnect with my friends and family. My husband and I had a blast at "Friendsgiving" in November. We saw a lot of family that we missed last year. I had a life-changing heart-to-heart talk with my best friend since first grade. In short, I basked in the company of other people.

I like to think of myself as some kind of "Uber Introvert" who doesn't need the company of other people. But that's a lie I tell to protect myself from feeling rejected. Honestly I love to be around other people. And I'm doing much better at letting my limits be known.

Here are just a few things I want to remember that happened this year that were positive:

• I spent time with my Grandmother-in-law. One of my favorite people in the world.
• I had a lot of laughs with my Mama (just like last year, but it's important to savor those moments.)
• I produced some truly horrible art, but had fun doing it.
• I took some fantastic photos.
• I found new ways to do the things I love (asked for help, waited till later, worked around my disability.)
• I stopped fighting the need for rest.
• I went to the Monterey Bay Aquarium when they were practically empty. A dream come true!
• I saw the Mendocino Botanical Gardens for two days with the love of my life.
• I was finally approved for Whole Genome Sequencing along with my son and mother.
• We built our dream patio, complete with waterfall!
• I got my little room back (once my son left).
• I learned I can drink red wine again with some magical little drops that remove the sulfates. 
• I was kissed and hugged about a million times.
• I got back down to a weight that I feel ok with. Not perfect, but better.

Just looking at this list makes me feel both happy and proud. I love my life, even with its limitations. I am safe, warm, fed and very loved. I wish everyone in the world could say the same. That's my wish for 2022.

Plans for 2019

I tend to keep a journal off and on. It's not a traditional "Dear Diary' type. More of doodles, lists, feelings, thoughts and plans. I like to go back and re-read them at times to see how much I've grown. This entry from 2017 really stood out to me and I found it share worthy.

I was still in graduate school at the time. This is a good snapshot of what chronic illness feels like. I wouldn't wish it on my worst enemy.

Here are the "goals" that I have been setting for myself through the years. I notice I didn't do it last year. I think that's because I had just graduated and felt I had enough to focus on with my job hunt.

More here about "Beginners Mind" if you're curious. 

"UPR" is a psychological term that means Unconditional Positive Regard.

On January 2018 I deleted my Facebook account. 

It took about an hour and a lot of Googling to figure out how to do it. Facebook is like that crazy ex who doesn't want you to go, peering through your window, hoping you'll change your mind. I can say with all honesty it was the best thing I could have done for my mental health. I was very much addicted to it (though less than most people I know.) I encourage everyone to engage in as little social networking as possible and spend that time deeply engaging with people in the real world.