How Lucky Am I?

It can be hard to remember how lucky I am right now, given the political world. But in many many ways my life has never been better. And since nothing lasts forever I really want to remember that.

I have my huge family around me. 

I didn't always have a very good relationship with my mother. In fact we didn't talk for 15 years (my choice.) We have since reconciled and she lives right around the corner from me. I love it. I get to see her many times a week. We always have such fun together. Laughing, talking, just being together. I love her and am so grateful for all of the time we get to spend together.

My half sisters and I have found each other five months ago, and we now have a relationship. I have always wanted to be one of three sisters and now I am. Something I thought was previously completely impossible. I love them and I love their children. I am the "Auntie Nette" to four stunning boys and one fiery girl (who will take no shit from anyone. Especially not boys.) 

The brood

Me and my little sister

Me and the middle sister

I have a best friend who is kind and lovely. She adores animals, is a fierce feminist and warrior woman. She is also chronically ill, so she can relate to me on a different level than healthy people. We've only been friends for a few years but we are incredibly close. I know I could count on her for anything. That is rare.

She got married this past Monday

My husband and I are very best friends. He cracks me up and makes me feel so special. So seen and heard. We have a very rare bond. I'm thankful we met so young so that we've been able to spend so much time together we're going on year 32 right now. My soul mate.

My son just called me his "confidant." That melted my heart. He also lives right around the corner. Something I'm incredibly grateful for. I appreciate our closeness and that he's as close to me as he can be to someone whose not his partner. I get to see him almost ever week. I love him very much.

He just turned 31 this week

My two dogs fill my world with sunshine and howls of laughter. Peels of laughter daily. They also fill my heart and my bed. Hahaha. I can't imagine my days or nights without them by my side. Often sandwiching me like the little pack that we are. 

My life is bursting with love everywhere I look. Every nook and cranny full to the rafters with people and animals who love me and who I love back. This is the first time in my life I can remember feeling this way. I want to savor every moment of it and keep them all safe and with me as long as I can.

My Body

My illness has a few different names, but they all mean the same thing. Mitochondrial Myopathy, Mitochondrial Dysfunction and Mitochondrial Disease. My neurologist explained the differences just refer to severity with "disease" being the most severe. Here's a tiny bit about what I struggle with. 

What are mitochondrial myopathies?

Mitochondrial diseases are caused by defects in mitochondria, which are energy factories found inside almost all the cells in the body. Mitochondrial diseases that cause prominent muscular problems are called mitochondrial myopathies ("myo" means muscle and "pathos "means disease), while mitochondrial diseases that causes both prominent muscular and neurological problems are called mitochondrial encephalomyopathies (encephalo refers to the brain).

A typical human cell relies on hundreds of mitochondria to meet its energy needs. The symptoms of mitochondrial disease vary, because a person can have a unique mixture of healthy and defective mitochondria, with a unique distribution in the body.  In most cases, mitochondrial disease is a multisystem disorder affecting more than one type of cell, tissue, or organ.

My challenges appear as severe fatigue, brain fog and muscle weakness in my entire body. I also struggle with cramps, spasms and constant severe pain. These are all of the reasons why I can no longer work. Yes... even a little (a question I get a lot.) "Can't you just?" NO!!!

I've had this diagnosis for five years now. In that time my muscles have become progressively weaker.

On top of my mitochondrial disease ravaging my body, I have severe head problems. "Intractable migraine" and "neuralgia" (occipital and temporal). Icepick migraines can come and visit me too. They feel just how they sound. No one flat out said as much, but I expect these are all after effects from my brain surgery in 2018. I certainly never had any of these symptoms before.

So that's my body in a nutshell. All of these issues have combined to turn me into an incredibly mindful person. I fully live in each and every moment (that I'm awake). I also actively look for the beauty and joy that is everywhere to keep me going. These coping mechanisms are incredibly effective. Well, that and a lot of drugs and medical treatments.

The down side of is I struggle to plan into the future. Not intentionally. Not in a depressed way. But like my brain is too Zen and tuned in to what I'm doing in the now. It can make even little things like what to eat or watch on TV impossible for me to decide. It's a strange feeling. Maybe my brain is simply busy coping with the war raging in my body.