The first week of the rest of my life

The first day of the rest of my life. The first hour, minute, second. Right this moment is the only moment that will ever be. Knowing that makes it easier for me to make this moment count. Who do I want to be right now? My answer is someone strong, resilient, who learns from the past. Someone who knows what I want my future to look like. At least a little bit. A future I prefer… how’s that?

In my future I would like to be healthy. I would love to get to sell my wheelchair van and my wheelchairs. I would be giddy if I could have enough energy and strength to walk. So in the present moment I’m going to do everything I can to give that possible outcome a chance.

Since July 26^th I have been eating to set myself up for success. Tons of fruits, vegetables, whole grains and beans. A little feta and goat cheese here and there. Lean chicken breast and oat milk in my coffee. I’ve also cut down my portion sizes to what is supposed to be “single serving” or close to it.

I’m very happy to share that I’ve been feeling much more energetic. I woke up at 7:30AM this morning. Something unheard of before. And Friday not only was I able to be out all day, but I didn’t take an afternoon rest.

When I have been resting it has been much shorter too. Yesterday was only an hour.

I’m feeling a bit clearer headed. My physical stamina feels vastly improved. I’m doing  a lot more that’s physical during the day. I’m also still gently pushing myself.

I’m excited and hopeful each second that I’m able to feel good. My pain in general is less, I think due to swimming a minimum of three days a week.

I’m so happy to have had some potential answers and to have the strength to make these good choices for myself. No pizza on the planet tastes as good as walking feels.

Possible Answers

Yesterday my doctor let me know that my latest genetic testing came back with something. She said I have a mutation on my HADHA gene, but that I'm just a carrier. She thinks that I'm a "symptomatic carrier" (who knew there was such a thing!?)

The treatment for this disorder is to not eat anything that's a "long chain fatty acid" as my body possibly can't process it. And don't fast.

(Click to see images bigger)

I felt very happy to possibly have some answers. We knew it was a Mitochondrial disorder, but not particularly which one other than the COQ10 processing gene being mutated. She said "This is the first test to come back with a definitive mitochondrial link." A missing piece of the puzzle being clicked into place.

So with that news and my wanting to lose weight anyway my eating is about to undergo a huge change.

I did a lot of research and this is what I found out. I really wish there was a "Short chain fatty acid cookbook." Sadly people don't eat like that. Basically a Vegan diet without soy is the best. Super lean meat seems ok. Not for all the time but occasionally.

I used to be Vegan years ago. I remember being hungry a lot and missing burgers. Ha ha. But ethically it felt really good.

There are a lot of gourmet beans on the market. I can splurge on those. Same with rice. So many kinds to chose from. Summer is the perfect time for lovely fruits and veg. I'm lucking I didn't find this out in the dead of winter.

My hope is that I can halt my disease or even reverse some of it. I barely dare to let myself dream of a healthy normal life full of nature hikes and sex. In no particular order.

(Thanks Mom for the wonderful collage!)