Hair One Day, Gone the Next

I have always been a chameleon with my hair. Ever since I first bought my bottle of Sun In and bleached it to a bright orange as a young tween. I treated my hair like another accessory. Like Jewelry. I had fun mixing it up. Short, not so short. Red, black, natural. Bob, pixie... 

But don't take my word for it. Here's some head shots from the last four years.

Box dye brown

No dye bed head

Shaved off post brain surgery head
(I did it myself)

Sweet henna head

Wonder Woman black, longer (for me) hair

Irish red hair

Up, down, head scarf, hair clips. I loved to play around with my hair. 

I haven't colored my hair in over a year now. I miss it sometimes. Just the fun of changing things up if I want. But I don't miss the mess, cost or smell. I also don't think I could do it now.

The way my muscle disease works for me, reaching over my head while sitting or standing is the hardest thing I can do. So shampooing, blow drying, all of those motions cause me a lot of pain. My arms fatigue very fast.

I wanted to grow my hair out again, but the styling involved with long hair has just become impossible for me. I can shampoo and do a quick blow dry, but that's it. Forget all the products and cute styling. Flat irons, curling irons, hair clips, bobby pins. It's all out for me. 

Instead of all those distractions I'm trying to embrace what's important in life. To stay focused on the things that really matter. My hair does not matter. As my husband says, "You're beautiful and sexy no matter what!" Having it short and natural saves me loads of energy, which is the most important thing.

My New Hobby

 For the last four months my husband and I have been enjoying a new hobby. Pottery. At first I thought we could both learn how to turn clay on a pottery wheel. But after the second time trying I learned it just takes way too many muscles. So my husband has been on the wheel improving each and every time. Meanwhile, I have been working at the table doing "slab build." That pretty much means just working with my hands without any clay moving. 

It has been tremendous fun! Shockingly so. Even more fun is the fact that I'm not very good at it. I'm learning each and every time. I'm a very creative person and I'm used to being pretty good at every art that I try. But clay? That's a new one for me. My muscle weakness also makes it harder for me, but not so hard that I can't do it (unlike the wheel). 

It's incredibly rewarding to actually make things that are usable in a different way than just hanging on a wall. We're making all our Christmas gifts this year, 

A finished product takes two pottery sessions. I make it at the first one, then they fire it while we're away. At the second session I glaze it. They have about eight different colors to pick from. 

Next up? A new dish set and plant pots. 

Powering Down

 So this is a thing...

It's called Livedo Reticularis. My doctors think I developed it from my Amantadine (aka: God's Cure Pill). It came on in May after my horrid sinus infection. I think they're wrong and it's from that virus. But they wanted me to stop taking Amantadine till I can be evaluated by a Dermatologist. Insert two month wait here.

Unfortunately without my Amantadine, this happened...

No, I didn't turn into a turtle. Not even a Ninja one.

Everything became slooooooow. I'm more tired in the morning (though I am sleeping deeper). The worse of it is my muscles became about 50% weaker. It has had a huge impact on my quality of life.

It has been about 11 days now with no improvement in my legs. They get much worse if I stand or walk. Last night I messaged my doctor to see if there's anything we can do while we wait to see what the dermatologist has to say. Blood labs? Antibiotics? I'm feeling desperate.

Because I'm moving less I also hurt more. It's a mess how that works. It's also been too hot to swim this week, which STINKS! Swimming helps me feel much better.

In the meantime I'm eating more to self-sooth, which isn't really helping my body either. ACK!

This little guy always helps!

I just have to ration my spoons even more than I was before. I have about 3 spoons per day or so when I used to have 6-10. And bathing always takes at least 1. Bummer.

I'm hoping for a situation update soon!