Old man winter is a sadist…

Ugh whatever is up in the Rocky Mountains right now is seriously sadistic. Nearly everyone I know is having unusual numbers of headaches and those of us who were already living life in the unusual column are clinging to the edge of the ledger by our fingertips praying to gods we don’t even believe in that a Peruvian Green Velvet Tarantula comes along and bites us.

That being said I walked today. I was able to do so because an amazing friend of mine created an amazing device for me.

See, I have some combination of facial neuralgia and parathesia that moves around my head. Some days I can wear glasses and masks and hats just fine. Others I can’t touch behind my left ear. Other days a wind across my face sends me to my knees. Lately I haven’t been able to wear anything behind my ears or touching most of my head for longer than a few minutes without my headache ramping up to GO-LIE-DOWN-NOW proportions.

As we are still amidst a global pandemic and I value my life and the lives of others this means I haven’t been able to go anywhere for very long.

Enter Scott.

Scott is a maker. He is a creator, a daydreamer, an inventor of wonderful things. He fiddles with things to make them better. He is strange and funny and wonderful and when I texted him and told him I needed his help he dropped everything to invent me this:

Why yes, that IS a neck mounted headgear-like device to hold your mask flush to your face without it touching the parts of your head that have inexplicably decided that touching is verra verra bad.

See:

So now even though my body doesn’t like wearing masks and the world is still basically a dangerous petri dish I can now go to the grocery store or for a walk with my husband and dogs without suffering for it.

What is the point of all this rambling?

There are three points actually.

Point one: I am on day three of my exercise for 15-20 minutes every day regardless of how I feel fibromyalgia treatment streak. Yay me! (Y’all are my accountability partners. Don’t you feel lucky?)

Point two: If you see an oddball creative person that thinks differently do walk past them afraid to meet their eyes. Go introduce yourself to them and try to see if your weird meshes with theirs. You never know when you will need a creative fiddler in your life.

Point three: If you are an odd duck, don’t fret. There are those of out here who celebrate and value you precisely because you don’t think like everyone else. If you feel alone now hold on. You will find other oddballs (like I did. I now have a lovely chosen family of tried and true oddballs in my life) to be your true self around but better yet, the older you get the more non-oddballs will see having oddballs in their lives make those lives fuller and more fun. So don’t give up. You are important. You are made of stardust. (Literally. Ok, I know we all are but I like to think we strange ones have just a little extra stardust than everyone else.)

Stay safe lovelies, and be kind to one another.

What is with the weather…?

There is some sort of weather ‘ledge’ here on the front range that is sending my body into a tizzy of confuddled circles trying to decide exactly how fucked up I should be.

It kind of sucks actually. My face is dancing it’s little spiky-heeled tango on the left side of my head and my scalp is super sensitive and my joints can’t decide if they are weak or stiff or just in pain.

I mean, it’s bad enough that my body wants to belong to the club of “medical science just doesn’t get me” but now the weather does too?

Can I sue climate change deniers for personal damages now that the global climate change is making my body crazy?

Sorry, lawyer brain went off on a trip at that one. I’m back now.

It just seems unfair that the weather on a good day can make me feel shitty so when I’m all “It’s my year to get understand my body” the weather is all “hold my beer” and then the beer is actually a multi-week long storm front that stays at the ice-pick stabby stage for the whole damned time instead of having some sort of precipitation that fixes it for me.

Anyway, despite Mx. Weather being an asshole I managed to box yesterday and walk briskly this morning. On track for moving my butt around and creating brand new small nerve fibers to combat this stupid syndrome of mine.

I also made an appointment for a surgery to correct whatever is going on with my small intestine and the scar tissue from my hysterectomy.

Then I made a cake, because I wanted one. I put beets in it though because I wanted to be healthy.*

So, I’ve completed two days of my new plan. I’m doing what I can to feel better.

* Also possibly because I am insane. However, six other people have tried this beet cake and declared it good so I am not the only insane one out there. It’s a bit like a carrot cake had a baby with a zucchini bread but was bitter about it.

That’s all for today loves, stay safe out there.

Oh my goodness, I almost forgot. Here’s a link to those Valentine’s ECards my haiku are featured in. I’d be honored if you would pop over and check them out. I believe you get to send up to five cards for each donation.

A year fit into me…

When I was having my first massage in a long while with Abby I has a transformative experience. It was one of those moments when you aren’t sleeping but you aren’t fully engaged with world and you can reach into your mind and really identify the things you NEED to do with your life.

I discovered what 2021 has to be about for me.

I recently has the discussion with my neurologist that he doesn’t know that there is anything more he can do to help me. I have failed all the drugs currently known to treat fibromyalgia.

So in this coming year I need to learn how to live in a body that is years ahead of help from medical science.

So here is my plan:

  • Find the things I can do to help myself. These include:
    • Exercise on the BoxVR every single day regardless of how much it hurts. Even if it’s only for five minutes. All the research says movement helps fibro.
    • Meditate.
    • Stretch every day.
    • Get a massage a week.
    • Lose weight to reduce stress on already stressed joints.
    • Be kind to myself.
    • Blog about your experience regularly.

I also decided to leave the gallery and work on a book of poetry. I want to write about my experience in a way that makes it accessible to those who don’t understand invisible chronic illnesses.

Finally, I need to take the time I need to love my body. I need to find a way to appreciate what it does for me instead of focusing what it does to me.

So it’s a grandiose plan, but I am hopeful it will help.

At this point, I am my only hope.