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. 

Always Trying Something New

I'm always open to trying new things to help me function better. The best discovery I've made recently is my "Visible" device. I did a lot of research before buying it. I read many reviews and watched videos. You wear it on your upper arm. I call it the "Anti-Fit Bit." The whole point of it is to help you track your efforts and energy during the day so that you don't over-do it. 

Ok, so I am the reigning QUEEN of over-doing it. Seriously. I've sent my body into rhabdo more than once. Which is awful. So when I first saw that there was a device to help me pace myself better I thought it might be a good fit for me. It is.

It monitors my heart beat and heart rate variability. HRV for short. I get notifications if my heart rate stays up high for more than 5 minutes. I can set how long. Then it suggests I take a break from what I'm doing so I don't expend so much energy.

Interestingly enough my heart rate goes sky high every time I shower. I always knew that showering left me tired. Now I know why. 

Here's what the app looks like on my phone. Every morning it takes a measurement of my heart rate and my HRV. Then it gives me a score. The score is called "Morning Stability" and it's a guide for how your energy might be on that day. You can get a 1 to 5. The higher the number, the more energy you have. I'm typically a 3. I've gotten a 4 a few times, but never a 5.

Once a month it asks a series of questions related to your health, what you're able to do and what you can't do. How hard things are for you, that type of information. Then it gives you a "Functional Capacity" score. This number reflects my ability to carry out day-to-day activities. 

A "Healthy normal person" is typically a 6. Here's mine for May. A 3.2

But here's what REALLY gets my heart racing...

Besides wearing my "Visible" device and trying to pace myself better, I also signed us up for Hungry Root. It's a healthy meal plan and food delivery company. They send me a weekly box with ingredients and recipes to make. We've only had it 1 week, but I already love it. 

It means giving up a lot of freedom with my food. The decisions are all made for me. At first I found this a bit scary. But now I like it. I can program it for what kind of food I want, how many meals I want, how much I want to cook and other things. Right now my box is set for gluten free, vegetarian meals. I'm getting some breakfast, lunch and mostly dinner. I just added fruit to my next order as well.

The only down side is the packaging. There is a lot of it. But we're also wasting less food and eating healthier, so it's a trade off.

The last new thing I tried recently is a drug called Naltrexone for pain. It's originally intended to help people stop drinking and using opioid drugs, but they discovered in very small doses it helps block pain reception. 

For me it gave me insomnia at night and knocked me out during the day. It also made me really sweaty and gave me a headache. I gave it two weeks and then stopped. It did help my pain a little, but the side effects were too much. Sleeping 20/24hrs is no good.

I think the next thing we're trying for pain will be Ketamine infusions. I'll keep you posted.

Now for my Hungry Root healthy lunch. No Taco Bell today.

The Dark Underbelly of Meal Planning

I want to try something new with my eating. I want to give meal prep a go. That's the one where you make all your meals and snacks ahead of time, then just eat what is in the pre-portioned out of a cute, little container. I thought it might help me not only lose some weight, but regulate my protein and meals better for my energy and muscles. It's easy for me to forget to eat until I get too hungry, then make bad choices. One of the blessings of having ADD.

I decided I was going to pack ahead for breakfast and lunch, but not dinner. For dinner I would just have a set menu like I usually do.

Breakfast was pretty easy to put together. I put everything into a big bowl, then scooped that into small baby food jars (that I use for my dog's food). That made five breakfasts.

Inside is:

• whole oats (gluten free oatmeal)
• walnut butter & almond butter
• frozen berries
• vanilla protein powder
• ground flax
• honey
  
  
  
  
  

Next up were my snack packs. I'm not a snacker by nature, but I'm working on that. Inside is:

• super baby carrots (the smallest I could find)
• sliced celery hearts
• black bean dip
  (1 can black beans drained and rinsed, oat milk, dried onion flakes, smoked paprika, pepper, salt, pepper flakes, red pepper spice, hot sauce of choice.)

High in protein and super tasty! This is the best way for me to find a short chain fatty acid dip. To make it myself in the food processor.

Now came the hard part. Lunch. My husband and I decided on chicken burrito bowls.

But wait... that's not chicken! Well, turns out I was short on chicken, so two bowls are Vegan with pinto beans instead.

It looks so delicious. What could possibly go wrong?

To start let me say this took about three hours. That's just the lunch. Not the breakfast and snack. And that's with my husband helping by slicing the onion, jalapeños, tomatoes and lettuce. I did the chicken and rice.

I baked the chicken breast in salsa, salt, pepper and a little Tapatio. Then I intended to finish it off in a hot skillet with a bit of walnut oil. Except I was too eager and didn't get the skillet hot enough. Darn. It was still tasty though.

But check this out...

What they don't show you on Pinterest

I had SO MANY DISHES from just the lunch! It was a bit nuts actually. My kitchen was a mess. I did it though and managed to make us each four lunches. I typically have lunch once a week at my mom's, so I didn't need five.

Here's what it is:

• diced onion
• diced cherry tomatoes
• fresh mixed greens
• chicken breast (pinto beans in 2)
• sliced jalapeños
• brown organic rice (cooked in a can of diced tomatoes with green chilies, 1tbsp walnut oil and organic spicy veggie broth.)

That's it! No cheese. 

Both the breakfast and the lunch were delicious. I didn't have my snack today because I got a late start. I had breakfast at 10 and lunch at 2. At 6pm we'll be starting dinner. 

I learned a lot from my first time doing meal prep and planning.

1. It will take a lot of food. Buy double what you think you'll need. I almost didn't have enough and ran out of chicken.
2. Buy the right containers. I was lucky to find great ones my first try, but that's important. Especially for fitting everything into the fridge when done.
3. Clean out your fridge before you make the meals. Make sure you have lots of free space.
4. Have a backup plan in case you run out of an ingredient.
5. Measure to get your portion size correct. For example I used a 1/2 cup for the rice in the burrito bowls.
6. Have someone to help you, or buy things already cut or cooked to save energy and time.
7. Get your skillet super hot to finish off any meat.
8. Have an empty dishwasher. Ha ha.

Finding my Limits

My husband is away on a business trip and I felt a huge urge to cook last night. I had all the ingredients to make some things that I didn't think sounded very difficult. It felt within my wheelhouse. It didn't go great.

I managed to finish off what I had started, but only out of sheer stubbornness. I didn't know where my boundaries were when it came to cooking, but I sure found out the hard way. 

It was the first time I could feel my energy failing mid-work. I could feel myself getting more and more fatigued. And I'm not talking just my muscles. That feeling I'm used to. This was something new. 

It was a slow energy drain. Like a bucket full of water that has a leak. I could feel myself getting more and more tired with each thing I did. Even just standing looking at what was cooking. It was honestly a terrifying feeling. 

I felt scared that I wouldn't be able to finish before I had to go lay down. Frightened that I bit off more than my body could chew. Shocked that such a small thing could drain me so quickly. Regretful at my decision to cook so much and not just wait for my Mom to help me. And sad for myself that I was having that experience.

The whole thing wasn't all bad though. I don't know my limits if I don't test them. I also won't understand what's going on with my body if I don't pay attention. To have that very real feeling of my energy draining rapidly due to being overloaded, as scary as it was, is also helpful. My disease isn't just all about my muscles.

I told my husband the other day that I wondered if my need to rest mid way through the day is due to my doing so much when I'm awake. Especially physical things like showering, dressing, putting things in the house away, etc. I walked a touch over a mile yesterday just by doing these things. That's quite a bit for me.

The tricky thing about my "limits" is that they are constantly changing. What I can do today I have no guarantee of being able to do tomorrow. So that makes me feel in a bit of a panicked rush. I have a constant feeling of pressure to do everything that I can today because it might be the last time I can do it ever.

(I wanted to take a picture of some food that got dropped on the floor as I was cooking, but I didn't want my dog to get it so I hurriedly cleaned it up instead. I always tell my husband "It's not a day with me unless I drop something.")

Try ALL the Things!

It's a new month. August. The bridge between summer and fall. A perfect time to try something new. I've been told (and my own research confirms) that I am not eating properly for my muscle disease. What I should be doing is eating many small meals through the day that are high in protein and "good" fats and low in carbs. But what I like to do is eat two large meals (especially dinner! My favorite) and nothing in between. Breakfast to me is a banana or just coffee. Not so good. 

Soooo... Since I want to be my best healthy self that I can be. And I'm also very fortunate to have access to food. I want to at least try eating the way that my doctors recommend. With gratitude in my heart that I have the financial stability to be able to do so. Especially now during the pandemic.

Soooo... I did a lot of research and here's what I found:

1. I should try eating 6 smaller meals a day. 
2. I will prioritize foods naturally high in COQ6 since that's where my major genetic mutation is.
3. I will focus on foods that are high in protein and fats and low in carbs.
4. I am going to pay close attention to my symptoms and how I feel.
5. I am going to try this for the entire month of August.

Yes. I already started!

I read that foods naturally high in COQ10 are:

• Trout
• Herring
• Mackerel
• Sardines
• Spinach
• Cauliflower
• Broccoli
• Oranges
• Strawberries
• Sesame Seeds
• Pistachios
• Eggs
• Soy
• Peanuts

(I got this instead of Taco Bell the other night. One small choice at a time!)

Some basic "good fats" are:

• Avocado
• Salmon
• Peanuts
• Olive Oil
• Eggs
• Dark Chocolate (85%)
• Macadamia Nuts
• Tofu

Foods high in protein are:

• Anchovies
• Eggs
• Yogurt
• Tuna
• Salmon
• Pumpkin Seeds
• Cottage Cheese
• Peanuts
• Tofu
• Beans
• Halibut
• Peas
• Oats
• Hummus
• Broccoli
• Popcorn
• Avocado
• Asparagus
• Potatoes
• Shrimp
• Guava
• Sun Dried Tomatoes

Food helpful for inflammation are:

• Flax Seed
• Green Tea
• Turmeric
• Walnuts
• Pineapple
• Kale
• Garlic 
• Broccoli
• Lemon
• Berries
• Avocado
• Cantaloupe

These lists aren't all inclusive, but are helpful for me. I also notice a common theme. Like rich fish, eggs and tofu. Those will be a staple for me. 

My hope is that maybe I'll have more energy with eating this way and even a little less pain. That would be lovely. It could also make some weight loss easier too. Fingers crossed. I'll keep you posted!

Food! Bon Appetite! Get Yo Grub On!

My husband and I are trying to stick more to a Mediterranean style of eating. Heavy on the seafood and veggie, light on the sugar and carbs. Our doctor whole heartedly encourages this and also recommended low salt. Although I don't really want to live forever, I would be happy with less pain, less inflammation and a little less body bulk to heave around. 

I went to our local Trader Joe's with my Mama on Monday. It was the first time I'd been since the quarantine. It felt really good to be able to pick out food for my family myself. That's something I had really been missing.

Here's a small sampling of what we've been enjoying.

Kale and broccoli salad on the left with hot sauce. I learned hot sauce takes away the overly "earthy" flavor that can come from kale. Then some soybean noodles (shockingly good!) with sautéed onions and a little mozzarella cheese. 

Top left is Huli Huli chicken with brown rice. My husband cut it up for me. We had it with a spring mix salad. Top right is the same kale broccoli slaw with my favorite fish - smoked trout! My puppy enjoys the skins too. Bottom left is brown rice with sautéed onions and eggs. I adore eggs and can eat them daily! I had that with avocado and a Honeycrisp apple.

My husband sweetly peels and slices apples for me and knows I like to have them with dinner. Honeycrisp is my favorite. High protein high fat works best for my body. Hence the egg and avocado. Springing for good eggs makes me feel good ethically and it also tastes much better than factory eggs. 

You can see it's not super complicated or expensive. We've been picking up restaurant food once a week both to support our local businesses, but also to give ourselves a break from cooking. Then my Mama also likes to feed us once a week or so. Though I tend to have coffee and lunch with her multiple days a week as well. 

Food is the center of our social world and I'm no different. In fact, food is quite important to me emotionally. It's something I'm constantly working on. 

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!

Modification

I am blessed.
Not because I have a nasty chronic illness.
But because I have the means and live in a place and time where I can access items to make my life easier and reduce pain. I'm very aware that not everyone is so fortunate, so resourced or so supported. This makes me incredibly lucky.

As I get to know what I can easily do and what's more challenging for me I also learn what's worth the spoons and what isn't. Some things I can still do fine, but they cost so much in energy and muscle strain that it's just not worth it.

Here are a few things I found (all on Amazon - no affiliation) that have been making my life much easier. I'm not giving links to each thing because that's a hassle. Yes, I paid full price and wasn't compensated at all. But they've helped me.

This has helped the most. It's a UV sun parasol that's super compact. It has much better coverage that a hat and shirt and is light and easy to cary. It was less than $20 and it is the single most useful thing I've bought. If you're on a medication that causes sun sensitivity or sun reaction I 100% urge you to get one. I need to get another one so I can leave one in my car at all times.

This stainless steel mini chef knife has also been fantastic. My hand would hurt for hours after using our nice knives. This one has a rubber grip that has a bit of give so the impact doesn't go straight to your hand. The shape is very useful and the smaller size makes it perfect for things I regularly chop like onions. It's my favorite kitchen tool now.

Handles on cups are also a big deal now. They help me keep a grip on my glass and keep my hand from getting too hot or cold. Something you have to watch with both RA and Raynauds. My favorite coffee travel mug with a handle recently broke (not my fault.) So I bought this one. It's ceramic instead of plastic and I love the wooden handle. It fits great in my hand.

Click on the picture to go to the Etsy store

I'd been sneaking some thick cardboard cup cozies from our local grocery store and keeping them in my purse. These are wonderful for when you're eating out in a restaurant. They keep your hands from getting too cold and improve your grip on the glass. Though I also recommend using a straw, especially if you're on an immunosuppressant. 

But to put the paper ones on I still had to lift the cup up. I was looking for some fabric velcro ones that I could just un-do and re-attach once secure. I found this fantastic Etsy shop with hand made cup coozies in all kinds of fun fabrics. Now I have 2 in my purse and 3 for home. 

Ok... this one seems stupid. But I really love fresh ground pepper! I also love my "choose the size of your grind" hand pepper grinder. But that's exactly the kind of motion I'm supposed to avoid with RA. So I found these electric grinders that also have a "choose your grind" setting. I haven't used them yet because each one takes 6 AAA batteries (and who has that many just laying around!?) Next time I hit Costco I'll get a pack. But I'm so excited to have them and can't wait to get back to fresh pepper on my salad. If you don't indulge in this, you're really missing out.

I now own two of these amazing baskets. One of delicates and one for panties and such. No more toting heavy baskets out to my garage. Now I just wheel dirty stuff out and clean stuff back in. 

The biggest modification to my life however hasn't been in what I've bought. Its been an adjustment to how much I do and in letting my husband help me. He does almost all of the driving now. Not that I can't but he doesn't mind and it saves my energy. I tend to wait in the car for super fast errands like hitting the ATM. I let him get me gas when he can. It saves me touching the dirty screen and pump. All these little things can add up to a lot of energy and hand use. He's wonderful and doesn't mind picking up the slack. I do what I can like cleaning the kitchen counters (it doesn't require bending or pulling.) 

It hasn't been easy for me to learn to ask for help or to rely on him for more things. I'm very independent. My Nana tells stories of me being very little and refusing the help of others with a defiant "I can do it myself!" That instinct is still strong. But my husband told me a long time ago that "Just because you CAN do something, doesn't mean you should have to." That has stuck with me. I'm very blessed to have his support and help and now I don't hesitate to ask for it when I need it.