Fifth Brain Surgery Anniversary

Five years ago today I had a craniotomy for a benign mengianoma. In English... I had brain surgery for a non-cancerous brain tumor. It was growing in the left side of my brain just above my ear. The surgery was very long, but everything went as good as it could go. I documented it here.

I celebrated by spending the morning at the gym...

I work out for 2 hours almost every day.

Some kind of cardio for an hour, then swim for an hour.

Then I came home and had a delicious veggie burger. The patty was "mushroom risotto." Very unusual but so good. I ate it with the last of my sweet and spicy pickles. Fermented foods are important for me to have.

When I got home Max and I ran some errands. He's my best boy. I carried him in his sling through the grocery store, but he got to walk and explore through the hardware store. What a lucky dog.

"Go faster mom!"

Now I'm finally relaxing with a nice glass of Kombucha. It feels good to be off my feet. 

I like to remember where I was five years ago to make sure I savor each and every day. I'm grateful to be here. Thankful I can walk. Delighting in shaping my body to be strong.

CHEERS!

A Second Teenage-hood

Remembering back to when I was a teenager, this time in my life doesn't feel all that different. I'm not talking about the pimples and stress. But the discovery phase of everything feeling new and exciting. Who do I want to be? What do I want to look like? What are my tastes? What tools do I need for the life I want and for who I am NOW?

The person I was two months ago could not be any different from the person I am today. I am full of energy and ready for an adventure at all times. Strangely enough, my style has also changed.

I shaved my head yesterday. #3 all over. I love it.
Going back to my natural color.

I've always been incredibly organized, but now I feel I'm even more so. The tingling of modernism aesthetics is pulling at my maximalist style. The "bohemian a la mode" that I've loved for so long is going by the wayside to be replaced by Ikea cleanliness. White is my new favorite color for my house (it was orange and teal.) I find myself wanting to purge most of my belongings and start over fresh.

My local Goodwill must be thrilled with all the donations they've been getting from me. Including my BiPap and Cough Assist machines. I have my old blue electric wheelchair up for sale on Ebay, but may just end up donating that as well. I'm keeping my new chair and the wheelchair van for now. 

I'm humored that I most needed to buy good walking shoes along with more bras. I stopped wearing bras 99% of the time when I was so sick because they took way too much energy to take on and off. Then obviously my shoes didn't matter much since I used my chair any time I left the house. Now I need a lot of support for the weaker muscles in my feet. And I actually want to wear a bra. I'm enjoying having this time to explore. It is a real luxury.

"Look at me. I am the captain now."

The other day I realized that I am once again the captain of my life. For so many years I slipped behind my illness, too weak to have autonomy or do very much on my own. My illness dictated...

• What I wore: Lose clothes that were easy to put on and take off. No bra. That was too much work. Or sometimes just wearing pajamas all day.
• Who took me places: I couldn't drive myself anywhere anymore and I relied on others completely.
• What I ate: I couldn't cook very much and preparing food was draining. I'd have easy gluten free options. Mostly I'd eat what my husband and mother would purchase and cook. 
• When I did things: I was always on other people's clock's. And I'd have a huge nap around 1-2PM, so that would cut into my day in a major way.

My illness even controlled my love life. There was no part of me untouched by my mitochondrial disease. But now...

Now it's all so fresh and new. I have the energy to wear whatever I want. I can drive myself to the store AND cook a meal myself. I can bathe, dress and put on some makeup if I want to, when I want to. These all sound like such small, basic things. Each one, each experience, is something I had been robbed of these last five years.

I also now have opinions. I get to have even more of a "say" in my day-to-day. For example, my sweet mother who loves to cook offered to bring snacks and food for us to the gym when we go. Instead I told her I wanted to do my own food. I love her food, but I missed that autonomy and the simple act of caring for myself through food. 

Suddenly I am the captain now. I'm back in control of my time, body and life. I still have mitochondrial disease. Just now it's more of a passenger rather than the captain. 

My Job is Me

Have you ever wished "If only I had the time to focus on myself and get into shape." I used to wish that constantly. I thought if I "only had the time" then I would be so incredibly strong and healthy. Well... now is that time for me.

My mom and I are going to be joining a gym. It's a bit of a trek away, but totally worth it. It's beautiful and it has everything. Everything we both need to become the strong warrior women we want to be. So NOW is my time. The time for me to focus on myself, my body and my health. To shape myself into the incredibly strong woman I want to be. 

Stay tuned for my progress...

Shiny New Life

What does one do with a shiny new life?

I feel nothing like I did. I think I was mostly dead. Just barely able to do things. To engage. To have a life. I am stunned at how different I feel. And how horrid I was before. Honestly, I have no idea how I was even getting out of bed. The difference is almost incomparable to how I feel now.

Is this what a full battery feels like? A full drawer of spoons? I feel energized. Reborn.

So what comes next?

I'm still building up my strength and stamina. It is going very well. I've been walking and gardening quite a bit. Sweating hard all day every day. That's a good start.

But also coming out of this horrible nightmarish fog is my brain. My brilliant buzzing little mind. It's able to get some nutrition again and the neurons and firing once more. And I'm a little bit bored.

I had the fantastic idea today that I could volunteer in my community. Just a little bit. It would be fun, interesting and a good way to get back into the habit of working. It is a wonderful feeling knowing you can do anything you want. I love animals, so I started searching for something in my town with animals that needed volunteers.

I came up our local raptor center. I adore raptors, especially vultures. This idea excited me. I gave them a call to see if they needed volunteers. They do and now I'm signed up for a volunteer information night. I am a woman of action.

The idea of helping out there excites me. Even if it's just cleaning cages. Getting to be that close to raptors, maybe even touch or feed one has me giddy! I'm so glad I thought of it.

Needless to say I feel like my energy is strong enough to handle something small like this. My future is looking so bright, but I'm not looking away. I'm diving in.

"I've Got a Golden Tiiiiicket!"

Five years and four months.
314 Blog posts.
And...
IT HAS A NAME!

I have... (drum roll please)

LCHAD (deficiency)
Long-chain L-3 hydroxyacyl-CoA dehydrogenase

Say that ten times fast.

I'm so excited because once you know exactly what a thing is. What's wrong with me. Then it can be treated. I'm incredibly fortunate because I can treat my genetic mutation with just diet. As long as I avoid long-chain fatty acid foods, I have energy! This is incredible. I feel like Charlie Bucket who just found a golden ticket in that bar of chocolate. Except I can't eat most chocolate.

I need to avoid as much fat in my diet as possible. Except for (strangely enough) grass fed butter and all sheep and goat cheese. Those are all short-chain. Well technically the FOOD isn't a short-chain fatty acid itself, but that's what it produces in your gut. It's all very science-y and complex. Point is I can eat it. 

Celebratory mani-pedi day with my Mama

As you can imagine all my friends and family are over the moon for me. I just walked a mile and a half this morning at our local nature center with my husband. And WOW! Losing weight sure is easier when you can actually MOVE. (Who knew?)

I told my husband that I'm gobsmacked how much brain space it takes to just move around and exist in the world as a disabled person. "Can I fit through here, am I going to knock this over, will this make me too tired, will I get stuck?" I know this covers many disabilities and size differences. To have to give up sacred brain space to such basic ways of existing is awful. Or as my grandfather likes to say. "It's disgusting."

Just being able to go for a walk and not think about those things with my body is liberating. 

That's the word for it. I feel LIBERATED!
Liberate: To set free from restraint or bondage.
Yes. That's the word.

I've been eating this diet for over a month now. I'm completely off my muscle relaxer Baclofen, I was taking it three times a day. I'm eager to see how many of my medications I will no longer need, but I'm trying to take things slow. Not my nature, but I'm trying.

I'm also looking at joining a gym. There's been an issue with my mom's pool at her community and we're on the hunt for a new one. All of my new energy has to be put to good use somewhere. Meanwhile, Max is reaping all the benefits.

September 2023

September 2022