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.

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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!)

Frustrations

I'm frustrated.

I absolutely hate being on the phone doing nonsense things that I've done a million times. I'm looking at you wheelchair company and medical supply company. Those two are the worst!

Fortunately since my last wheelchair appointment she has been behaving like a dream. But I still have a part on order that needs to be replaced and it has been a month.

Then there's trying to get my money back from the muffler accident. That's been a lot of fun. Three e-mails and one phone call today. 

Plus I spent 80 minutes on the phone with my medical supply company only to be told that they never got the new scripts for my medical supplies that I've been trying to get for the last five months. If I relied on them for colostomy supplies I'd be using Ziplock baggies. They are awful.

Who runs these for-profit companies?

How can they get away with treating their clients like this?

How are there not more alternative?

What a massive racket all of this is!

It costs a fortune to be disabled. Both in money and in time.

It's Not Just Juice

 

If there's ever any doubt that:

1) Being chronically ill is terribly upsetting and hard and...

2) That I am a Drama Queen

Here is proof. I took these pictures when I had just finished making fresh juice with my juicer. It was so hard to for me to finish doing that I was covered in sweat at the end of it. The battle I fought with my body to get that juice done was real. I had bought all the fruits and vegetables and I wasn't going to waste them. But DAMN! Running them all through my electric juicer, cutting some, digging the pulp out of the juicer, putting it back together, mixing and jarring the juice. It completely exhausted me.

The first picture was taken right when I was finished. And yes. Maybe I cried just a little from physical exhaustion.

The second picture was 30minutes later. Still sweating. Still exhausted.

The last picture was a full hour later. Still actively sweating a ton and still exhausted. 

My body behaved like I had just climbed the tallest mountain barefoot with no water. I drank a Gatorade and was still sweating. A cold shower and not moving for the rest of the day helped. 

This is what my chronic illness looks like.

From juice.

Just making some juice.

In the future I think I'm going to juice with some help.

All about MAX!

Meet MAX! Max is my support animal. He is the best behaved dog ever. I joke that the second we leave the house and get in the car to go on some adventure (or just to the store) he turns into a stuffed animal. So quiet and just sniffing the world around him. At home he's a trouble maker who nips at our heels as we walk down the hall. I'm guessing to show his annoyance at being so little while we are so big.

The story of Max begins October, 2021 when I saw this...

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The second I saw that little face I KNEW he was meant for me. I just knew it. It wasn't love at first sight. It was more than that. Soul mate at first sight would be more accurate. I told my husband about "Ethan" (what a God awful name.) And he agreed we could apply to adopt him.

Our little man had been rescued from a hoarding situation along with 11 other dogs. I had been looking for a miniature pinscher due to their small size and less anxious nature than other small dogs. There were three other families applying for Max, but I won out in the end. Of course I did. We were meant to be.

Two weeks later we were on our way to bring him home. He was living in a foster home and she was sad to see him go. I think she would have kept him if she didn't already have cats and dogs of her own. He was a rolly polly little pudge ball. Like a round "potato." His first nickname.

The first time I met Max at his foster Mom's house.

Poor guy was twice the size he was supposed to be. We kept our fingers crossed he wouldn't die before we could get his weight down. He breathed very heavily and had a hard time going up and down stairs. We also quickly learned that he was deathly afraid of wood floors. Uh oh. It's a common thing for dogs but nothing we had encountered before.

Max also had acid reflux. I'm not sure if he had throat damage from being so obese, but he still has to take a Prilosec every day or he throws up at night. 

Our first days went smooth. Super smooth. He didn't know how to go for a walk and was scared of everything. But with love and patience all of that went away.

Coming Home!

We also learned that Max was not 3-5 years old like we had been told, but 6. I'm glad I didn't know that at the time however because I might have had second thoughts. 

I made all of his own food feeling it would be healthier for him and better for his digestion. I took over his weight loss and eight months later he hit his goal weight. 

The first time he slept like this we died laughing. 
It's a breed trait. Most minpins do it. 

Lucky for us my mom (who lives close) also fell instantly in love with Max and he with her. She takes him out for car rides, buys him "pup burgers" and walks him at our local cemetery. She also watches him on those rare instances he can't come with us.

It didn't take long for Max to start coming everywhere with us. He loooooved car rides from the first moment we got him. It took him a bit to feel comfortable out in the wide world however. But the more we took him the more he loved it. Especially safe in his sling with me.

Snug in his sling.

How I carry him now. A special front facing backpack.

It requires less arm strength from me.

Max also quickly proved himself to be an excellent service animal. He lets me know when it's time to rest or when I'm tired when I don't notice it myself and am engrossed in something or pushing it. He'll nudge me or just go to bed and wait for me to join him. And if I'm not doing well and in bed he stays by my side (unless Dad's eating peanut butter.)

Max is the smartest dog we've ever had. He's quick to learn new things. He just wants to be with us all of the time no matter what we're up to.

Smart boy solving a treat puzzle.

His first "pupachino" to celebrate hitting his goal weight.

We can't imagine our lives without Max. He's the funniest, funnest little bundle. His personality is enormous and I feel so privileged to be able to share my life with him. Love and patience have led him to grow into his own sweet dog-hood. We all fee lucky to have Max to share our life with us. I only hope he lives forever.

My husband likes to make pictures in my Sunday coffee.

This one is Max.

He's road trip ready!