Staying Still While the World Rushes By

I'm so frustrated right now.
So filled with angst, guilt, anger, wistfulness, worry, etc.

I hurt. The steroid shot in my back hurts so bad I can barely move, barely breathe, barely hold still.
The pain consumes me.

And yet there are people in Paris right this second who are feeling more pain, more fear than I will ever, goddess willing, feel in a life time.
Survivors of the bombings and terrorist shootings, hostages of these terrorists (regardless of their color, creed, religion, or race I will still consider them terrorists) are living in a Hell I cannot imagine.

People of Color all over the planet live with more strife day to day than I can process in my tiny world view.

Women and men of all ethnicities have not only been through, but have survived, more abuse at the hands of strangers and loved ones than is conceivable for me.

And here I sit, filled with futile self-anger, guilt, frustration because my pain keeps me from functioning.
I know people personally who push through more pain than I feel.
Why can't I push through?

I disgust myself.

And because I disgust myself, I become more angry at myself.

Comparing my situation to what others are going through does not legitimize my pain any more.
It actually takes away from what they have and are and will experience.
Their trials and tribulations are not about me. I can never compare to them.

And so I am helpless and angry.
I want so much to just jump out of bed and persevere but when I do, the pain rips through me and I'm on my knees; gasping, crying, and hating myself all over again...

...wondering where all my strength and courage went.

She's Not Heavy

I'm down and out again.
I apologize for only posting when something seriously wrong is going down but that seems to be the only time I remember.

I realized recently that it has been months since I've taken my thyroid med. The last time I got it filled was in June. That's three months for my thyroid to cook up trouble. Not to mention the fact that my doctor finds it impossible to refill even the simplest of meds so now I will also run out of my epilepsy and Parkinson's meds. My health is rapidly deteriorating along with my mood, my ability to concentrate, and my ability to sleep.

After a full day of activities and very little sleep, I got home and couldn't move or straighten my legs. I tried very hard to get from the car to the house, even waiting until the others had gone inside so I could limp, hunched over, groaning and not be embarrassed or shamed. Even my children tell me not to "make those noises" or "act that way" because it "scares them".

So I waited until I was alone so I could suffer without being chastised. Only I never was alone. Jason never left my side. He helped me patiently while I struggled to walk from car to front door and when I asked; with humiliated, downcast eyes, if he could possibly carry me inside, he lifted me without hesitation and brought me to bed. He never made me feel like I was over-reacting or faking, he simply helped without comment or judgement.

Yesterday, he bought me a candy bar as a surprise and when I flung myself into his arms in excited thanks, he caught me.

All those stereotypical trust exercises you see on the movies could never live up to the moment when he caught me and didn't let me fall. I have a feeling he'll never let me fall or fail. And having Donovan to watch Jason constantly there to support the people he loves, is a reinforcement for the great behavior Donovan already shows toward Moryssa, Jason, and I.

Arianna had her choir concert tonight and Michael stayed for one song before leaving. Jason has been to every single event, without fail, since he's arrived.

Jason told me that Laurie and the boys would go out while he stayed home with Ryan. That, indeed, the entire family would go to family centered events all the time such as cheer camps and football games, but he was expected to stay home and watch the baby alone. He loves being able to go out and spend time with the family and even though the events aren't always up his alley and sometimes even boring, he's still included. We do everything as a family.

My responsibility is to tell him what my expectations are and I've discovered I have a really hard time with expectations, both my expectations of others and theirs off me. I realized Jason wants me to tell him my expectations for me, however and that flickered like a firefly in the hot southern night. That might just be the ticket. When I have expectations of others they often fail to live up to them, either because they can't or don't want to. This disappoints me and leaves them feeling judged and condescended. When others have expectations of me, I often fulfill those expectations regardless of my physical or emotional comfort level, again leaving me disappointed, used, and exhausted.

I've never once tried to fulfill a preset list of expectations for myself that someone else could help me remain accountable for, where someone could catch me when I jumped blindly toward my potential. It's exciting. I'm breathless.

Finally, I can hear Jason whisper, "She ain't heavy. She's my baby."

Down Time

The last two days have been full. Full of love, sharing, adventure, excitement. Yesterday we went with the Wendy bird and her family to White Sands. There, it was quite windy and brutally sandy, but we played. We ran and climbed up hills at top speed, rolled bumping down them into dizzy, giggling piles, and buried each other in the sand. Last night we came home sore but happy.

Today we went into the Gila. I had a really hard time with my fear of heights on the road there and was crying before we arrived. Once there, we waded in the river, hunted for pretty rocks and toasted marshmallows. It was a very technology free day and, as a mother's day, one of the best I can ever remember.

But now we're home and sunburned and achy, exhausted, and dehydrated. Keira was just ill and, as I lay here, I feel the familiar pull of a seizure. Times like these are when they like to happen best, when I haven't gotten enough sleep or water, too much sun and excitement...

The exhaustion pulls at me like a lullabye, rocking me toward darkness but my brain is still programmed for high excitement and intense thrills. The currents cross and... After a hiccup of consciousness I'm minutes/hours later, feet/miles from where I was only a minute before.

During these times I can sometimes feel an aura. At one time it was a smell or a tingle at the back of my neck. At others, there was just a split second of sudden surety that I was about to descend into madness. Now, there is a feeling associated with it, a feeling of biting against a soft resistance that doesn't really exist. A feeling that is formed when one strains the TMJ from clenching ones teeth too tightly.

Fear quivers but only dully because the exhaustion has already begun to pull me toward oblivion. I wonder briefly if I'm about to have a seizure, then slip thickly toward sleep.

Not tonight.
But, with that faint aura, my body reminds me that I'm pushing my luck. Enjoy life but all things must be done in moderation.

There Is a Golden Moment

My tea is always cold by the time I finish it. I get distracted with one thing or another and soon its cold. The last sip is always so sweet though, because all the honey has thickened and sunk to the bottom.

That's my life right now. I'm so busy being busy right now, with Jason and the kids, with my friend "The Wendy Bird" and her two lost boys, tending to myself for the first time in my whole life; that I don't have time for the dirty business of the bitter tea that is my illness.

It is real. Of that I have no doubts. It is no neurological sleight of hand or psychological curse. The pain does exist, and it is constant.

But on days like today and yesterday, I can almost forget that its there. It's like an unwanted odor that lurks in the air. You become accustomed to it until you've left the room and returned.

I don't believe my pain and fatigue has mysteriously disappeared simply because I'm happy. Though I do seem better able to "rise and shine" and I'm able to do it a lot earlier than I've previously been able too. I simply believe that the noise of my illness has trouble rising through the dine of my happy home. I awake earlier and more refreshed because Jason ensures I get to bed on time. I am in less pain because I'm busy and have less time to dwell on it.

I'm drinking up the honey right now. That golden moment suspended, sweet and thick on my tongue. And I'm loving it.There is no way cold tea can compete with the sweetness of love, life and laughter.

Cat Ranchers

The Trouble with Tribbles is that they multiply. And quickly. And not even logically.
The same goes with cats.
We started with one cat. She had two female kittens. Now her kittens have each had either one or two litters and we are swimming in kittens.
Last count: Four Adult Females, Three teen males, one teen female, and seven kittens.

The thing is, they're supposed to be indoor cats. They're supposed to be all female but suddenly their breeding at an alarming rate, faster than I can possible get them neutered and...

Like I said, now were swimming in cats.

I forbade the girls from naming them knowing  full well that once they are named it is a thousand times harder to let them go but suddenly they all had names. Two-face and Ginger are the Eldest females. Moonlight and Sticky are Two-Face's daughters. Sticky has two litters, the teen: Mr. E, Albus, Socks, and Harriet Potter, plus five unnamed kittens...

ok fine. I named one. I call it Pinkie.

Moonlight has one litter: Snowflake and Smokey who found homes this weekend and "The Twins" who are so small and helpless I'm afraid of sending them out into the big bad world.

And we were doing ok. We were maintaining even though the price of cat food is higher than the price of gas. Until last night when Socks decided he wanted to start acting like an asshole.

Be forewarned people. I curse. I'm going to curse and talk about kinky sex and witch craft and you all will be utterly blown away.

My little Socks. Socks and Mittens, Mittens and Kittens, Kittens who lost their mittens, Gloves. Socks decided he was going to get laid and he didn't care who did it.

That's when my little Socks and Mittens cat turned into S&M cat.s
He meowed all night, clawing at doors and calling to his one and only true love.
He moaned. He cried. He coooed.

The only problem is that every female in the house is either his mother, his aunt, his sister, his cousin, or an elderly neuter who hates everyone.

And now we both hate life.

Doorways

There are lots of different kinds of doorways and windows in life. Literal ones that go from inside to outside or from one room to another, figurative ones that represent transitions of time like the doorway from night into day or morning into afternoon. Doorways of consciousness that go from darkness to enlightenment...

There are also doorways where one can change their state of being from material to ethereal, bodily to ghostly, living to dead.

In spirituality, these doors and windows of consciousness or dimension are called "tween times"and represent a form of transition or metamorphosis. In paganism, these times shudder places are often represented by crossroads.

In popular television, Crossroads are haunted by apparitions called, "cross roads demons" who's sole purpose is to catch someone at the exact moment of decision and change the desicion in the favor of themselves, usually by promising a boon in exchange for the traveler's soul. It is purported that famed blues guitarist Robert Johnson sold his soul in such a deal to gain fame and fortune. Would he have gained said fame without the crossroads devil and kept his soul? Highly probable.

In the craft, depending on their pantheon, there are several deities that deal with such things. Janus is in charge of helping make tough choices when multiple options are available. Hecate, who watches over crossroads, and conceivably their crossroads contracts, especially ones that may end up in the underworld, is also in charge of the doorways that manifest as the forks in life's roads.

There are gatekeepers assigned to the more spiritual  portals in life, as well. Morpheus guards the gate between awake and sleeping and, his melancholy brother Orpheus, guards the gate between sleep and death. Ere how else would we ever find our way in dreamland.

The new house is filled with doors. A perfect, matte, cream, snail spiral of halls with doors that curl inexorably onward forward to the center, or the heart of the house, the kitchen.

When we moved in I smudged the whole house to remove negative energy. Then, I sealed all doors and windows to the outside world (portals to some outer world). Then I sealed off all mirrors (windows to some other probable inside world). The I burned sweet grass braids to reinvite the positive energy. I slammed an invisible glass globe over top of our home, built invisible brick walks, and strapped a gigantic, indigo hued robe over it all.

Last night we slept peacefully and soundly. Even the TMJ I suffered from chronically  loosened up.

Tonight, I lie awake waiting for Morpheus to fold me in his soft caress and, in my mind's eye, I walked through a doorway the color of blue skies and white cotton candy clouds and I hear a voice. My voice.

"I Think My Father Just Passed Away."

Death doesn't affect me the way it used to, before my chronic illness, before Orpheus' sweet strains lured my mother to her own reward, but they do affect me.

I will stop by his house tomorrow and check to ensure he's ok. I'll inquire about his health. Tonight I am convinced he's following Orpheus down that dry stretch of terrain to the underworld and yet I do not grieve for he lived his life to a beat that would put even the muses to shame.

His life is complete and he's ready to transform to the next stage or hang about in this one a little longer.

His choice.

So Much Noise in a Silent Woods

Some nights my meds kick in right away and I drift softly to dream land before my head even hits the pillow.

Some nights, like tonight, they're is so much noise in my head, so much going on, I have a hard time settling in.

Tomorrow I will go to sign Arianna's opt out paper for the PARCC standardized testing. There are rumors that it could affect her grades, her ability to move on in school, her ability to graduate, and her ability to get into colleges and get jobs down the road of life.

I've spent so much of my life relying on education, depending on it to get me through adulthood. I was the posterchild for school, both secondary and post secondary. I breathed education into my children. Education was my religion. Learning, my Faith.

I've lost Faith, folks. I've lost Faith in the system that is not only failing me but is now failing my children.

They told me if I worked hard enough, did enough homework, busywork, school work, curricular and extra curricular activities that I could choose my future. The told me if I just got good enough grades that I would never want for anything that I would have security and prosperity. They fucking lied.

All my work had gotten me no where. All of my awards and good grades have gotten me is a broken body, getting welfare that doesn't even begin to cover the bills.

I lied to my children because I still thought education was important but they took my son, who had so much potential and taught him the same things over and over until her got so frustrated he quit school. He's happier car hopping at Sonic than he ever was learning the Pythagoras theorem or how to correctly dissect a sentence. They failed him and in turn, I felt I'd failed him.

Now another child is pleading with me. Telling me that public schools are a waste of her time. Telling me that she could get twice as much done getting home schooled as she's getting done now simply because she'll be able to work at her own pace. She told me the other day that the after school tutoring program decided she needed a full time tutor. A girl who had struggled against dyslexia and ADHD is begging me not to let her slip through the standardized cracks and I found myself telling the same old lies.

"School is important. You need school. You'll get things out of school you could never get at home." And yet I realized with a sick, sinking feeling that I was lying right to her face. That she was smart enough and driven enough to succeed if only she wasn't hindered by the constant tug and pull off bureaucratic vulgarity she was the victim of day after day at school.

That the teachers were tired, overworked, underpaid, undereducated, burned out, and now we're expected to add two months of standardized test prep to their year.

That students were being asked to go to school year round to catch up for the failure of these tests that tried to pour all our little pegs, whatever their shape, into square holes.

I knew I could give Arianna better, often did just discussing her day over dinner. After all, weren't we talking about the little girl who had to teach her third grade teacher how to spell "entomology" and what it meant? We're talking about the little fourteen year old girl who has college honors level knowledge of Greek and Roman mythology and at least a college freshman level knowledge of biology and physiology.

We're also talking about the girl who spells completely phonetically and whose penmanship is about that of a third grader but who can paint, sing, cook, do mathematical calculations in her head, and can't watch black and white movies because the images jumble. My sweet, darling girl, who at the tender age of fourteen is doing the work of a master level shaman death worker as she blindly flounders her way to become one of the most powerful psychopomps. I've ever met.

How many other kids her age even know what as psychopomp is? How many girls her age skip datenight so she can help the little burned boy cross over?

I've told people for years I'm fourth wave feminist and to me that means realizing that women's rights are important and that we desperately need those rights but not at the cost of family and children. I'm choosing to become a housewife in order to make sure my children don't get lost in the cracks. To make sure they have a home and recognition. To give them teaching when the government makes the teachers unable to do their jobs.

I'm there, as a woman, as a mother, to support my child's journey and to understand, that while it might not always be the journey I would have picked for myself, it's still a long and scary journey but they've got my back.

Always.

And thank the goddess that Jason has my back because I couldn't do this alone.

Together. As a family. That's when it'll get done.

I'm Lost

I miss myself.
The me I used to be, before the pain and fear and exhaustion. I feel like some vital part of me it's missing now.

Oh sure, I put on a show, smile for the camera. I can be bubbly, I even glow now that Jason is in my life.

But there is some part of me that is lost. There it's a vibrant, creative, alive woman out there wearing my face, pretending to be me. The part of me that enjoyed watching the sun rise, taking hikes, reading books, the smell of snow and summer rain, a clean home... had escaped me some how. And I'll I'm left with is the debilitating, numb exhaustion or the screaming, ripping pain...

Mostly both.

The pain robs me of my ability to enjoy my kids, my home, my pets, my love, myself.

I convince myself that I'm only suffering from stagnation and that if I only get up and get going it will all be better. So, I rise, take a shower, do some yoga, clean some of the house and find myself so exhausted I have no energy left.

Jason and I are considering beginning protocols. Little tasks that I'm forced to do every day. My baby steps so to speak. My first protocol is that I get up every morning and make the coffee. Here is where milk jug woman would peruse Facebook, read, drink tea, or leen el diario.

I go pee, then sink back into the warmth of the bed.

Active missing girls does yoga, breakfast, writing a poem, and doing the dishes. I sleep.

Lunch, a walk, a shower, doing some laundry.....meditation and prayer time. Devotionals over the dishcloths, prayers over panties, sanctity during sock sorting.

This missing girl had definitely got something up on me and I want it back. I want a job, and income , a personal life.

Dammit!!!

Do you know how much it would mean to get a pain free (physical and emotional) hug from my kids. Remember the dates off concerts and trackmeets and boyscout duties?

And again, I look myself in the milk jug and I say, "mind over matter. I can do this without that other smarter, more creative, more articulate half of myself. Then I get up, get showered, dressed, teethbrushed, makeup put on, hair done, shoes slipped on, keys in hand....

And realize I have nowhere to go because I've hated on and alienated all my friends.

Here's another way of telling it. If each of your normal daily activities was a single brick on ONE of the great pyramids of Giza... I just choose my brick from the bottom most keystone spot and now the pyramids is coming back down onto my head.

Somewhere in here is a lesson about slowing down and only doing what is most important but for the time I just want to know why milk jugs gets to have all the fun and ends me with all the cool down exercises?

This is my chance to use protocols as bait to lure jugs back to me and once she gets here, adding no amount of harmony or trickery is going to separate us.

I remember being able to hike to the top of a mountain. Now I can't even get to the base of it.

I'm getting my mother fucking mountain back. And all the beauti-fuckin-wonder-ful wildflowers they're are to smell along the way.

Protocols, stubbornness, good timing, and a firm hand from Jason and the girls is going to get me back in synch with my missing half.

And you.

I'm going to need all of you too. So if you come over and the house is a mess, look me in the eyes. See what you find there. If there's tears perhaps you came by to help out with the cleaning a little. If their filled with pain maybe you came over to help cooking. If you come over and they're dull and lifeless then it's you're turn to spot a protocol that needs to be set up and put me at it.

I move when I don't have pain
I move when I do have energy.
Sometimes, I don't move just because I don't know where to go next.

Give me a gentle hug and some kind guidance.  And bear with me.

Loud Quiet

I should have known, when I felt the world tilt and saw the ground swirl up around behind me, that it was going to be a bad night. My wrists softened the blow my ass received and, as I went inside, they began to throb.

This is a new era. The era of #foxfirelove expired when I met his wife and found out how excited she was for me to move in and become her second wife.

This is the era of #soakingwetshoulders.
He cried on mine. I cried on his. Somewhere along the way, we found love. I'm happy now. I'm a partner instead of a parent or a participant. Still, it's only been three months and he hasn't experienced the mother of all flares yet.

It happened tonight. Yesterday was wonderful with romantic gifts and candlelit wine dinners, parties, and kid free hotel rooms after. So adult and romantic and lovely. Today was doughnuts and coffee with old friends and home again home again, jiggety jig, after the grocery store.

Made dinner that I was suddenly too tired to eat. Fell on my ass in a most graceful way, by trying to catch myself on Jason's pant's leg and almost pantsing him. Then, a last minute decision to watch an extra episode of Charmed, washed my faced, did a load of laundry...

Then, slid gracefully into a dark cool bed. It was too warm. That should have been my second hint. By then, I'd laid on my back, my stomach, my knees (child's pose) both left and right fetal positions and yes, I'd even tried both cat and camel poses before the tears came.

Anyone with fibro will tell you, clothes are too heavy and hugs hurt. I describe it as waves of electrical battery acid that roll over your body. I moaned, groaned, cried, screamed, begged, bargained... I even prayed.

Jason told me he wished he could kiss the pain away and my head, particularly my brain, wanted to wiggle free and flee the scene of human speech, it's tone, rhythm, and screechy clickity click nonsense like angelic glyphs on a chalkboard.

His warm hand soothed me and made me less likely to gouge his tongue or my eardrums out. The gently whispered words were like adamantian steel claws shreading at my skin, his touch like glass, my own cries made me want to giggle and flee at finally having reached the freedom of insanity. But his presence called me and I could hear a deep calm drumbeat in my ear, his heartbeat. I breathed until my heart matched the tone.

Fibro flares that keep you in bed with a low grade fever and make you sluggish and nonsocial are what everyone talks about. "I hurt a lot. I sleep a lot. Must be my fibro flare."

Well how about this? My skin is too heavy. Sounds hit me like sharp objects, smells like fists to the stomach. Clothes feel like chain mail made of barbed wire. Taste? Cereal is about what I can tolerate. The sympathy you give me is like a warm blanket that you wrap me in. The pain is still all inside but now I'm hot, claustrophobic, and muffled, and ashamed.

Tonight I cried out in pain. Not just, "holy fuck that hurt" but instead a "why why why why why why why" with drool and snot and tears and sweat dripping all over your nice cozy blanket of sympathetic pity.

And you don't have an answer for "why me" or "how come". So now you're stressed and in pain and triggering some memories of your own.

Fibro is like labor. But with labor, often at the end you've earned something, a new baby! With fibro, after the same amount of pain and sickness and hysteria, you're only incentive is that it starts all again.

At the end of fibro, the only thing you have is the dark, bitter night, the pain, confusion, exhaustion, loneliness, and the guaranteed it'll all happened again, very soon.

You're on the wash board, folks.
And the infidel is your own body.
It's you.

Then I get to get up and try to be thankful for oranges.