"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

Medical Catchup

It has been a while since I updated what's been going on medically. So here's the skinny...

My leg is feeling much better. It feels like it was maybe inflammation that pinched a nerve or something and just took a long time to heal. My MRI came back fine and neither the sports doctor nor the rheumatologist could find a cause for my extreme sudden pain. BUT...

The rheumatologist wanted to rule out some autoimmune disease possibly going on. He ran some labs. The results were interesting. So far it didn't flag for anything specific. But it did show up positive for many different things. I have a message in to him to see if we're doing more testing, or if that's the end of it.

Is this English?

Gotta love lab results.

I've actually been feeling better energy wise and have been trying to push myself daily physically. I'm sore all the time, but I feel good about stretching my body in what I can do.

I went through two treatments of dry needling. It did help my neck and shoulders. Only during the last few days have I been having pain there again. It's almost like intense acupuncture. It lasts a lot longer than that for me and I get goldfish crackers after. I'm not sure it's worth the discomfort of the process though. 

I'm still getting my Botox for migraines every three months. However I changed my monthly injections from Amivog to Ajovy. Ajovy is supposed to be just as effective without the constipation side effects. I've only had one dose so far. But I'd have to say it works just as well as Amivog, maybe even a little bit better.

Thank goodness all the rain is done. That change in barometric pressure all the time was incredibly hard on my head. I can actually feel sharp pain where my head plates are when the weather shifts. It's not a fun experience.

The pool is back open and my mom and I had our first swim last Saturday. I love the water so much. I feel like I can do anything in it. It's so supportive. Getting out is a monster though. I feel triple my weight. I just try and go really fast. That helps.

After recently topping 293.7lbs I pumped the breaks on my eating. My all time heaviest is 297 and I got concerned being so close to it. I can feel the difference in my body a lot if I get over 280. An adult male gorilla weighs 300lbs. That's pretty big for a Vegan. And a little too close to my size for comfort. 

Yum Easter candy!

What's life without treats now and then?

Fortunately my garden is doing well and the summer produce is ready for planting. That will help me eat more vegetables. Here's my latest haul of broccolini, purple broccoli, sugar snap peas and chives.

I also have my beautiful back patio to spend time in. It has been fantastic to eat out there while the weather is springtime cool and breezy. This Friday we're doing a family dinner and breaking in the Hibachi for the first time. I'm very much looking forward to it.

Symptom wise I'm feeling the best I have felt in a very long time. My sinus infection cleared up. My leg pain is down from an 8 to a 2. My energy is the best it has been since I can remember. And it's springtime. I'm taking each day as it comes and living my best life.

Max does his part to help.