All posts by Savvy Spoonie

I am an artist, writer, jeweler, and a Spoonie. Before becoming a Spoonie I was a very busy high achieving attorney and advocate bent on saving the world. Now I'm struggle to redefine my life to fit within my reduced energy level. Some days are better than others. I have fibromyalgia, trigeminal neuralgia, and chronic daily migraine.

Brain Gremlins.

Remember Gremlins?

cxhr9irr
Hi! I am cute! I make cute cooing sounds with my cute little mouth. Death-causing havoc fiends jump out of my skin if you f&%k up in your care of me!

That adorable fuzzy Gizmo who popped out slimy green havoc wrecking monsters when someone broke the rules? Don’t feed them after midnight? Don’t get them wet?

I am pretty sure I have brain gremlins.

This is a brain on gremlins.
This is a brain on gremlins.

Brain gremlins also have rules.  Don’t drink red wine.  Don’t eat chocolate.  Don’t have refined sugars.  Don’t forget to drink enough water.  Don’t eat grains.  Don’t eat beans.  Don’t wear perfume.  Don’t go out in the sunshine.  Etc. Etc. Etc.

photo(3)

They also pop out slimy havoc wrecking monsters when those rules are broken.  Those monsters squeeze my skull, stab my nose, punch my neck, send rivers of fire through my eyes and in some instances attempt to cut me in half with a chain saw.

gremlins-1984-chainsaw-attack
Dramatic re-enactment.

The problem is twofold:

1.  I don’t know all the rules, so I can’t actually stop from breaking them.  Also, some of the rules I have no control over, like don’t live anywhere weather happens.  (OK, moon here I come!)

2. There is no blender I can shove these gremlins into without also blending my face.  As much pain as I am currently in, I am pretty certain face blending would be worse.

Pretty certain.

Mostly pretty certain.

Will it blend?
Will it blend?

All my life I have been told my migraines would go away when I reached menopause.  Well, I have been in full menopause for a year and instead they have gotten progressively worse.  At my last appointment my doctor told me that something like ten percent of female lifelong migraine sufferers reach menopause and their headaches transition, change, get worse, and don’t go away.  He believes I may be part of the ten percent.

He explained that even if I am not, the treatments I am looking at now are the really scary ones.  Psychedelics.  Medications that cause memory loss.  Medications that cause personality changes.

I am terrified.

He made me promise to call if the final attempt at botox didn’t help.  It hasn’t.  I am waking up every morning in so much pain I throw up when I move.  So I called to see if he could think of another not terrifying treatment for brain gremlins. The next appointment I could get was in thirteen days.

The blender’s not looking so bad now is it?

I madly called around to other doctors to see if there was anyone I could switch to, any other headache clinic that could make me feel like there was still hope.   During my search I found comment after comment from people like me. People who have had migraines all their lives, have tried the abortives, the preventatives, the botox, the massage, the chiropractic, etc.   “No one can help me.”  “My doctor said I am out of treatment options.” “They told me I will just have to live like this.”

Oh shit.

Oh SHIT.

Have I finally arrived here?  I have had headaches since I was twelve.  That’s twenty six years of doctors, tests, and ineffective treatments.  Am I untreatable? Am I stuck like this forever?  Have I finally reached the end of what they can do for me?

Me with permanent brain gremlins.

This possibility freaked me out so much I went from pained and anxious to outright anxiety attack.  In a crying shaking fit I called my boyfriend and sobbed unintelligibly over the phone.  I am sure all he really heard for that first few minutes was something like “I am …gasp… brain… gasp sob… so scared… gremlins… sob… forever….”

Luckily for me he speaks crazy.  He calmed me down and agreed that yes I could be stuck like this forever and that if I am, than I am.  As he put it: “You are an amazing person who just doesn’t feel good a lot of the time.  You can still do amazing things.”

Okay.  He’s right.  This sucks.  I am at a point where I don’t actually believe there is any miracle cure left.  However, this doesn’t mean I lose.  It just means I have more to manage.  I have to be better at following the rules I do understand and I have to keep trying to discover the rules I don’t yet understand.  For those triggers outside my control, I will just have to be patient and kind with myself.  I will have to get better at asking others to be patient and kind with me.

I sent out a call to my facebook contacts and got all the best referrals for migraines.  I will do one last really big push to see if I can find someone who can find a treatment.  If that doesn’t work then I will have to deal with the very real possibility that I am part of that unfortunate ten percent and I will have to find some way of finding humor in it.

Hence the gremlins analogy.  I think I can work with that.

Life by candlelight.

It wakes up before I do, wresting me from unconsciousness with a thick unstoppable thumping.  I feel the fearsome pounding knocking at my dreams, pulling me from sleep with it’s tenacious teeth. Before my eyes even open I know the world will be too bright, too loud, too much.

Once awake I have to convince myself to move.  I know I will probably end up vomiting before I am even dressed as the act of sitting up causes waves of nausea to shoot through me.  I climb out of bed and stumble towards the bathroom, wishing I could teleport, fly, or maybe even sleep forever.

The light burns in my eyes as my stomach heaves from the motion.  I struggle through teeth brushing, a hot shower, and the donning of clothes.  The act of getting up has exhausted me.  I nearly convince myself to go back to bed.

If I am lucky, I will get better enough to move about the world in dark glasses. If not, it will be me in my room with an oil lamp on.  The stronger my headaches get, the more often I resort to candlelight to make it through my day.  The soft flickering glow caresses my fragile eyes instead of piercing them.  I have learned to read by candlelight, write by candlelight, crochet by candlelight.  I mute my screen to nearly black to work and write on the computer.

I have tried so many things, medications, therapies, treatments.  None have worked.  At this point I wonder if I will forever have to live my life by candlelight.

A cross-post from A Cop and a Lawyer Walk into a Bar…

A friend and I are undergoing a new blog attempt, over at A Cop and a Lawyer Walk into a Bar.  It is mostly fictional silliness and oddities we pick up here and there. Here is my first post:

 

Cat’s Paw (Chapter One)

Ms. Kotka pulled her kelly green hood over her dark hair as she walked back to the small basement office she shared with her new partner.  She passed the open garden square near the pound where they had met. The remaining tree leaves hung on with a steel grip in the bitter November wind as their fallen compatriots seemed to dance up the sidewalk towards the center of town.  Ms. Kotka pulled the hood more tightly about her face as she walked toward the door.  The graying shingle hung above clattered against the small stoop light as she opened the door and walked in.

Cat’s Paw
We buy it all,
We sell it all.
Inquire within.
Leopold Muridae, Proprietor

Her modest heels faintly clicked on the dusty tile floor.

Mr. Muridae, Ms. Kotka called out, I hope you have the stove lit, it’s bitter cold outside.

It’s smoking away merrily puss, a thin reedy voice replied, come revive yourself with a warm beverage.

Ms. Kotka wound her way through the overstuffed and under-dusted shelves, tables, and cases holding the bulk of the shop’s curios and back into the small living space behind the store.  She hung her coat on the rack beside the door as she stepped over the threshold.

The room was warm and cozy, a bright fire peeking out at her from behind the iron stove front.  Mr. Muridae sat at his paper strewn desk, working on the computer, while a half-nibbled grilled cheese sandwich sat ignored by his side.  Mr. Muridae was thin, reedy, and as grey as the day she had just firmly shut outside.  He was dressed in a smart tweed vest and trousers, wore golden eyeglasses on his face, and had the dusty appearance of a true scholar.

Kitty, he piped, it’s awfully cold outside.  Are you sure you are up for tonight?

Ms. Kotka settled into a cushion before the fire and reached for the tea kettle on the cast iron stove.  She poured herself a generous helping of milk, added a few drops of tea, and set her mug on the stove to heat.

 I am loathe to leave such a cozy abode to wander about in this weather, however, if you say I need to go out again, then I need to go out again.

The firelight caught on her greenish golden eyes and glimmered off the buttons on her lovely green dress.

I believe I have finally mastered the art of this silly thing, here try it on.  Mr. Muridae climbed down off the chair and carried a bedraggled shawl over to Ms. Kotka.  Attached to it was a tiny rusted broach hiding a small remote camera.

Ms. Kotka grumbled as she took the scarf .  It was unpleasant in the extreme to leave her lovely clothes behind and don this nasty thing.

All this cloak and dagger nonsense Mr. Muridae, there must be a neater, tidier, and perhaps less stinky way to accomplish our goal? Ms. Kotka held one end of the filthy shawl up in the air and wrinkled her nose in distaste.

Kitty, I’ve told you.  If we are going to get the footage we need, then we must move about the city unnoticed.  If you wandered through the back alleys as you currently look it would attract attention! Now go change into your costume and let’s get to work.

Do you mind if I finish my tea before I go back out into the chill? Ms. Kotka replied archly.

Of course not, and I apologize.  Warm yourself and rest from your day.  Once you are ready we will begin.  In the meantime, I have some final adjustments to make. He returned to his desk, scattered in papers, and within seconds was absorbed in whatever was on the computer screen.

Ms. Kotka sipped her tea before the fire and let the heat sink in.  Eventually she stretched languorously before she hopped up and began walking around the tiny room.  When she reached a screen in the far corner she ducked behind it.  A few minutes later she emerged covered in filthy rags.

All right Mr. Muridae, I’m ready. 

Mr. Muridae looked up from the screen and studied her.  He then walked over to her and began rubbing her down with a dirt covered towel.  When he was finished she looked for all the world like a homeless waif.  He handed her the shawl and she draped it over her head and pinned it at her throat with the rusty old broach.

Walk around a bit please, I want to see if it works.  As Ms. Kotka moved about the room he peered closely at the computer as she did, tapping his fingers in excitement.

It works! I can see what you see! He flipped about in excitement.  Oh I think this plan will work! Finally we will have our revenge!

Ms. Kotka’s eyes narrowed and she began to move with deliberate slowness.  It’s about time they got their comeuppance! She growled.

Mr. Muridae froze in place instantly.  After a moment or two of silence he shook himself.

My dear Kitty, would you mind calming down a bit? You still make me very nervous when you begin to puff up like that. 

Sorry Leopold, when I think about all the tortuous humiliation my father had to endure it infuriates me.  Ms. Kotka closed her eyes and began to mutter quietly.  Summer breeze… soft grass… sunlight… ahhhhhhh. Ms. Kotka sighed, all signs of her prior agitation had vanished.

All right, said Mr. Muridae abruptly.  It’s time to begin.  Last time we relied too much on chance.  You are no longer going to sit in the park capturing whoever walks by.  This time we are going to be more targeted.  Your mission is simple.  After dusk you walk about, find windows and look in to them.  The camera will record what you see and stream the images back to me.  Once we have enough footage, then we assemble it and see what our next steps are.

Ms. Kotka looked down at a pile of dirty rags she wore in distaste, crinkling up her nose she grabbed some torn up old mittens.

Don’t you think people will shoo me off?  I can’t believe I can wander around peering into people’s homes without attracting attention, even as filthy as I am. Mr. Muridae stood before her with a small comb, matting her silken mane.

Set aside your sensitivities Kitty.  Revenge is a dirty business. As for unwanted attention, you would be surprised how many people will politely ignore you, so long as you don’t linger too long or appear threatening.  Mr. Muridae set down the comb and stood back to admire his creation.  Perfect.  No one would suspect you of being anything other than another lost soul wandering in the night. 

To be continued…

*********************************

* Note from the author: I was raised by a writer.  She would tuck little serials into my lunch box to help me get through the day.  I spent my lunch regaling my table with the adventures of Detective Purr Pawprint.  It is in homage to Purr that these characters were penned.