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!

How Summer's Going

Summer 2025 is more than half over and it's going very well. The less animal products I eat the better I feel physically. I'm also have a lot less pain, especially at night. This is a huge leap from the person I used to be. Someone who would lay in bed at night and cry from the pain. 

I very quickly went from using a motor cart to shop to not even using my handicapped parking. And this...

I haven't seen the dimple in my "bad leg" in at least six years. It's usually always swollen no matter what I do. But now it's almost as strong as the other one. I've been biking and swimming, so I'm sure that combined with my diet is why.

This is how I feel. Like I'm "almost me again." It's the best feeling in the world.

I've been pushing myself, but paying close attention to my limits. I did a mile and a half walk with my husband yesterday and made 10,000 steps for the first time since I became ill.

Right now I eat a vegetarian diet with minimal dairy. And the dairy I do eat is usually fermented, like yogurt. I use oat milk in my smoothie and just eat a lot of Buddha bowls and Mexican with no cheese. The biggest dairy I eat is eggs, which don't seem to bother me.

I've gone from riding my wheelchair to the pool to swim with my mom to riding my electric bike! And yes, I do peddle. 

I work out with pool noodles and water weights about three days a week.

Another accomplishment this summer, no fear of being in the pool alone.

My mom observed that both of us usually feel our best during the summer. I agree. I think I am the most physically active, despite the horrible heat. I also tend to naturally eat a bit lighter and not quite as much.

I have felt hungry almost every night in bed. But I'm down to 281, which is a big deal for me. I'll be so happy to break through the 280's. What a wonderful summer of success!

Important Anniversary

Today marks one full year since I left my job. No... left my career. A career I loved and worked hard to achieve for 10 years. 

When I left I thought it would just be for three months. I thought I could "recover" enough to come back "stronger than ever." Our ableist culture told me this was something I could "fight and win!" I mean... it's not like I had Cancer. Right?

No... not Cancer. What I did have was a serious muscle disease that robs my body of processing energy correctly. What I also had/have is crippling migraines that left me unable to work. They cause pain, blur my vision, make time jump, can make people look like flat 2-D cartoons, give me severe dizziness, make me feel like I'm falling (you know that jump scare feeling when you're almost asleep? It's like that). They cause exhaustion (on top of my energy issues that I already have), make my muscles even worse and cause short term memory problems (on top of the memory problems I already have from my mitochondrial myopathy). Try working with that going on. Even for an hour.

The Botox shots have been hugely helpful. My migraines aren't the kind that come and go. There's bad and worse. So to get any kind of symptom relief is an enormous improvement to my quality of life. But I digress... this was why I had to leave work.

What leaving work did to me? I'm honestly still processing that loss. 2020 has been so shocking and I had so much change so quickly to my entire life that only now is the dust settling in my slow moving (but still brilliant) brain.

I feel the loss of my identity as a therapist profoundly. BUT (there's always a but/and in life if you look closely). But I am also building up new identities as I talked about a little bit before. I am still thriving. I can do both. Re-invent myself and mourn a profound loss all at the same time.

I'm learning the language of my body. What different symptoms mean and how to minimize the big ones (when possible). I'm learning to love myself and all my flaws, not to be "at war" with my disease. My disability is a big identity and it's not one that's healthy to "fight." 

I am the orchestrater of our home. The organizer. The planner. The artist and creative. A daughter, wife and mother. A puppy lover and gardener. I take pleasure in watching the people and things I love grow and flourish. I'm a disability advocate and a friend to some. 

These identities are why today doesn't feel like a loss. Today feels like a day to remember and recognize when my world changed, but I am still myself. Still passionate, wise and full of love and life to contribute to my community... It will just be in a different way than I originally thought and planned. 

The next big project

One good thing about being home rather than working 40 hours a week is that it has afforded us the time to get some lingering home projects done. So far we've had our leaky kitchen sink replaced, the dry rot facia boards in the front of our house replaced, our front door fixed (complete with door handle that was falling off) and most recently our tub re-calked. My husband proudly installed the shower grab bars himself!

The next project we have up is a big exciting one. We're getting cement work done to form a ramp to our front door. Right now the lip to our front door is 3 inches. Even my six wheel tank of a chair "Dory" can't take that on. We also have a useless flower bed taking up space making the walkway to our door tight for a chair. 

Two lips into the front door.

We like to use our tiny front patio for coffee when the weather is nice and it would be fun to expand that out to make it larger. This would helpfully cut down on some of our garden size and hopefully make it more manageable too. 

Then the driveway will be expanded to better fit both our new wheelchair van and our Kia Soul. We have a useless little weed patch that takes up a good portion that will be cemented over giving us more space. 

Weed patch taking up driveway space.

Not for long weeds!

All those cracks will get patched too.

Thanks California earthquakes.

Here's the wonky flower patch with old bricks. 

You can see the tiny patio too. 

I'm hoping to make ALL of this cement.

Now that we took on the wheelchair van payments I do have to be very careful with our projects. After the cement our last big one will be our fence. It's literally falling down on one side and patched all over on the other. Considering we live between an in-home daycare center and a bunch of college kids (neither were there when we bought our house) a good, tall fence is very important to my mental health. Especially being home as much as I am. Anything we can do to cut down the noise is a medical necessity. Heck! I should be able to write it off on my taxes!!!

What's Working (and what isn't)

I've been challenged with chronic illness for a while now. If you go all the way back to when I contracted Latent Tuberculosis then it has been four years (2015-2019). My mother recently asked me if the time before I struggled with health was 100% for me, what percent would I be at right now. I told her 10%. For me my 100% wasn't very long ago, in fact I can remember it like yesterday if I let myself, but file that one under "things that don't help me". Should we start there? Yes, let's...

A favorite smell to spray on my bed - that works!

What Doesn't Work:

1. Dwelling on the past. Even visiting it briefly really. Ditch that mental train to the past and stay in the present or very near future.
2. Pushing myself too hard physically. I went through an understandable phase of trying to push myself as hard as I could every day. That just led to exhaustion and me feeling much worse quickly. Plus it gives others the false impression that I'm able to do more than I really can. "Invisible illness". They can't see what it costs you to over-push. This also goes for not resting enough, not using my mobility tools and trying to have sex at the wrong time of day. Pushing gently but checking in with myself frequently is what works best for me. 
3. Comparing myself. It could be comparing myself to others, or to "normal" people, or even to what I used to be able to do. I am myself here and now and that is all I need. 
4. Fixating on symptoms. Research is good and I am the expert in my own body, but it's a fine line between research and fixation. A VERY fine line that I know I've crossed in the past. My condition is rare and to me that means I have to be diligent on research. But that research can lead to me over-reacting if I don't watch it. 
5. Living too much in the moment. Planning is very helpful for me. Making a meal menu, preparing food ahead of time (my husband does a lot of that), reviewing my week, figuring out how I'm getting to appointments and who is taking me. If I'm too much "in the moment" I won't do any of that. For right now I'm still able to and I find it useful.
6. Disconnecting from my body. It's easy for me to just go on auto and completely un plug my body from my brain. Scary easy. But then I end up doing something stupid, over-doing it or just not realizing how I'm feeling. Not good. Doing things like shaving (if I feel like it) henna coloring my hair, getting a haircut, giving myself a manicure (still can!) All of these things help me re-connect to my body which is incredibly important. 
7. Eating crap. I crave junk food and really love it, but I know it's horrible for me and makes me feel terrible. Eating anything processed is terrible for me. I honestly try to eat whole, real food as much as I can. Homemade yogurt smoothies with honey, frozen berries and flax, homemade beans, fresh fruits and vegetables, gluten free foods, etc. But it's a struggle because I'm a whore for Taco Bell. 
8. Drinking alcohol. Any kind of alcohol really will just flare my pain. Plus I already feel about 3 drinks drunk all of the time anyway. So I don't need it, but I do miss it socially. Like eating crap I know if I drink alcohol I just made myself intentionally feel worse. 
9. Giving up on the medical industry. Treating my chronic illness requires a fine balance between my medical team and complimentary interventions like vitamins, eating well and resting. I've had many times where I just scream "f*&@ this shit!" And never come back to any doctor again (like after that spinal tap by Dougie Houser.) But I also know that although understandable, it's not in my best interest. So I go again and again and again.
10. Keeping my struggles to myself. There was a time when I didn't have this blog, or tell my husband ALL of my symptoms, or let anyone know how much I was suffering. At one point my neuropathy was so bad that I was up for hours each night crying because of the pain. But still I went to school the next day (and got all A's by the way.) But keeping people out and suffering alone doesn't work for me. It leads to loneliness, depression and is a strain on my relationships. 

Noticing nature - that works!

What's Working (*Today):

1. Being around family as much as I can. Instead of pushing people away I now try to let them in with heart wide open.
2. Keeping everyone I love informed about my health. If I learn something new about my condition I try and share it. And not just with my husband, but with my son and other family too.
3. Asking for help. I used to be horrible about this, but TB made me change my ways. I now never hesitate to ask for help (although I do like to try and do things myself first.) 
4. Saying "no" even to the people I love most. I'm the only one who knows how much energy I have and what I can and can't do. So it's up to me to let people know when I simply can't do something. Especially when I need to rest. 
5. Making my health a priority. Not work, not my son, but my health. If I want to be there for others then I have to take care of myself first. This is also something that took me a long time to start doing because I get a lot out of helping other people. Heck! It's what I went to school for 10 years to do!
6. Keeping hope and an open mind. It's very easy to lose hope in my situation. Struggling with something rare, that's a moving target is a real challenge to treat. But there are hopeful clinicians out there and I'm lucky enough to have found a few. I also have a very hopeful family and that's awesome.
7. Caring for myself in every way I can. So yes I try to care for my body. Wear the right shoes for stability and support, take my medications when I need to. But I also try and take care of my mind. Connect with people I love, write a blog, read a book, fart off on Pinterest... These are all ways I take care of myself. Oooo! And I'm becoming an avid collector of soft lounge clothes. And did I mention my adorable new pink purse?
8. Savoring the moment. Not getting too far ahead or behind the time. Noticing the hummingbirds outside my window, a perfect dandelion as I roll with my dog, her sweet breath as she sleeps. All these precious moments would be easy to ignore, but by noticing them I'm keeping myself mentally well and grounded in the present. 
9. Stressing patience. I used to be a very impatient person. But when I have a three month wait till I see my neurologist again, I had to learn how to be patient. If not I'd go insane. So I learned how to breathe, relax away that tension and release those expectations. 
10. Expanding my identity. My job was a huge part of my identity. Losing that was a big blow. As I told my family the other day "I lost my job and the ability to drive in the same week". Considering I've been driving for 30 years, that was a big loss too! So the best way to help myself with that loss is to explore new identities. I used to do art so much that I considered it a big piece of my identity. I lost that when I took on "student". Same with "writer". These are two that I can re-claim. When I was working full time I couldn't garden as much. Now I can do a little and it's something I enjoy. I'm enjoying the process and it makes the loss of my other identities sting a little less. 

A nap with my girl - always works!

The importance of fun!

It's Halloween today and even though I'm not dressing up and going out I am still finding ways to have fun. If I were to dress up, this year I would go as Frida Kahlo. But not the super colorful one people usually dress as. Her more serious black mood like this:

I can relate to her disability and suffering but how she still struggled to express herself, her sexuality and her creativity. In fact, yesterday I bought two canvases and I want to get back into doing art. Any kind of art really. Just something fun to do to express myself and keep mentally active. 

Having fun and playing is a big deal in our house. We own a lot of games and many things others would consider "childish". Children's books, pinwheels, shadow puppets, Disney movies, stuffed animals, coloring books and crayons all have a happy home with us. And even though I don't use them all the time, just having them makes me smile. 

Even going to Target yesterday and picking out these bubbles to hand out to the little knee biters that will come knocking tonight was fun. I wheeled through the store picking out just the right thing. I like giving out toys instead of candy. Candy is gone in an instant, but a little something they can bring to school and share is better. 

No matter what the next day will bring I will ALWAYS find a way to have fun. (And like I suspected yesterday, I'm feeling much better today.)

Plan Kick Ass - Day to Day

"What's going on with Plan Kick Ass?" I'm glad you asked! It has been a little over a month since I did an update. Here's how things stand. 

Food is good.

I don't always have the spoons to make stuff from scratch.

Tomorrow is another day.

Here's the areas I'm doing well at. Eating fresh and local I think I have down. I'm also eating much more veg than I was! I make a smoothie when I can (like I need to make one today). I'm stretching at least once a day, typically a few times. I have "naps" down solid and I really reduced my work week. Ha ha.  

Bruce is a napping PRO!

I've been asking for help when I need it, but my husband and mother usually want to do things for me before I ask. That makes me stubborn and actually LESS likely to ask for help. I need to talk to the two of them about that. 

I live in a food oasis where we have tons of fresh, local, delicious food constantly available. And let's face it. Food and eating it makes me happy and I need a lot of "happy makers" right now.

Our beautiful Farmer's Market on Saturdays

Roasted fall veg (that my husband wouldn't touch)

Here's where I'd still like to improve.

• Eat smaller portions.
• Eat more seafood
• Eat less sugar (No, it doesn't help. That was a fluke day)
• Eat less dairy
• Back to no soda (As soon as I finish my last Ginger Ale)
  

Most things I try (power drinks, sugar, Magnesium, etc...) seem to work great for a little bit, then taper off. So I'm not doing the power drinks regularly because there's just too much crap in them for what little I get back anymore. 

Roasted chicken (that my husband enjoyed)

On the medical side my doctor is sending me to an ENT to rule out any vestibular causes for my dizziness. I'm willing to try anything because not being able to drive BLOWS!

Accomplishments

When I was in school an accomplishment was finishing a major assignment or passing a tough final. When I was working an accomplishment was making a breakthrough with a client or making my bonus. Today an accomplishment is doing a load of laundry or watering my plants. 

Accomplishments are necessary goals that keep me feeling good about myself, my skills and my life. Even though those goals have changed drastically over the last month, they're still important for me.

Here's a few examples of what I consider to be accomplishments this week:

1. I turned in my application for my town's disabled community transit and got my card. This gives me more options to get out now that I'm driving much less.
2. I asked my doctor to sign off on some important paperwork for me... and he did! 
3. I got my first SSI disability payment. That was an intense process and I felt proud that I accomplished it. 
4. I made it to the mall with my mom (she drove).
5. I made dinner last night. It was hard, but I did it!
6. I walked my dog twice this week with my chair.
7. I talked to my doctor about my new symptoms in person.
8. I made an appointment with a new neurologist and scheduled my next brain MRI.
9. I shaved my legs.
10. I went to the bank (like INSIDE!) and stood while I waited.

Plan Kick Ass Progress

I'm starting week three of "Plan Kick Ass" now and I'm seeing improvement. I'm much stronger that I was before and my joints and muscles hurt less. I attribute that to pushing myself physically. I've been walking my dog, not using my wheelchair at work, taking short walks at work, stretching daily and doing chores like gardening and cleaning. Things I haven't done in almost two years!

My eating is going well. I notice that the healthier I eat the worse I feel when I eat something not the best (like gluten free mac n' cheese.) If I stick to whole foods I do well. Now I'm going to focus more on portion size.

We're in the thick of tomato and pepper season where I live and they're delicious! I'll be sad to see them go soon.

My stamina is the same and I still feel the need to nap daily. I am slowly decreasing my Cymbalta and that seems to be changing my sleep. I'm now down from 60mg to 30mg and my mood is still really doing great. I attribute that to the increase in exercise and the sense of accomplishment I feel getting more done and taking charge of my body.

My weight is still an issue for me and something I'd like to work on. Though I feel I'm heading in the right direction. 

And of course... here's your gratuitous puppy picture!

Plan Kick Ass Week 1

Long Awaited Chair Day!

My chair was delivered this morning at 9AM on November 1st, just as promised. I wasn't sure how I would feel about this long awaited day. Upset? Anxious? Depressed? Happy? It turns out I was excited. When I first whizzed down my street with the delivery man jogging to keep up I let out little girl giggles and felt down right gleeful. That was a surprise. What really shocked me though was this feeling of freedom. Of "Oh right! That's how I used to be. Able to go anywhere I wanted, any time I wanted and not feel exhausted." Even though I've only been going through this shocking muscle issue since May, I had already forgotten when it felt like to briskly go down my block without pain and struggling not to sit on the curb. 

I hate the term "wheelchair bound." It implies that the person is "stuck" in some way to their chair. Instead any mobility device should be seen as liberating. They give the person the tools needed to get on with their life. That's what I'm hoping my chair will allow me to do. To get on with my life and gain more independence.

I only wish the new chair would fit in my car. That's the big bummer. She weighs 250lbs and even with a ramp would be too heavy and big for my Kia Soul. We could buy a handicapped accessible van, but they are incredibly expensive. Instead the plan is to see how my muscles are doing and then make a decision in December if this is something I still regularly need. If I do we might buy a lightweight folding electric chair like a Fold and Go instead of a van. 

A lighter chair would also be one I could travel with, which would be great. Most of the folding light electric chairs will fit in any car, so they can go along with your rental car when you get to where you're going. I don't think they're for people who need a chair 100% of the time, but for me it might be a good fit.

We're going to walk the dogs tonight. Something I haven't been able to do comfortably for a long time now. I'm excited to go along! It's those little things that I've really missed, but now get to enjoy again thanks to my chair!

And no... she doesn't have a name yet.