Who was that, thinking through my brain? Luckily, slowly pulled back in to the circle of souls, the eldest talking until I listened and came home. Somewhat stretched out and perfectly timed for me to come back from my cloudy chemo brain world and open my soul to listen and hear and remember. To be effected- shown through my affect. Very interested am I at how lately old souls pop by to say hi- just to help me feel among family, not alone. So many younger souls confuse the elder. When left alone surrounded by youngins, the elder cries out for their comrades… When I feel myself ready to explode, my cells screaming for old souls so they can rest for a minute, feel among family. A visit from my soul family. And all of a sudden loneliness dissipates… Disappears; left behind when replaced with a comfort only known when your soul group comes to visit and touch your soul with infinite, unconditional & transcendent love. Just for a short moment. But that’s all you need. That touch lingers- the love you feel for a while. You enjoy the love, you purr, you coo :) prrrroooo ok, gone from my brain & on to find a lime pop
Just got thinking. No change on my CT scan Wednesday and my PFT was worse since Sept (we didn’t have the last one from around Jan. that was worse than sept also, so I wonder how this compares to that.). I wonder if this is gonna work. It has only been 6 weeks, so I’m probably prematurely disheartened, but I’m just having a moment of longing to be well. I’m a slave to my lungs- stuck on oxygen at a super slow pace and I tire so easily that it stinks. And to top it all off, I don’t have any money coming in to get a massage or acupuncture or a massage or a spa day. Just $185 “temporary cash assistance” and $200 food stamps per month. If I didn’t have my Mom, I’d be out on the street. And the dr bills keep coming from last summer. Luckily, I have Medical Assistance now, so it covers everything now, but it stinks calling the dr’s offices all the time saying the same thing- sorry, I can’t pay and I hope it’ll come in soon. I keep hearing of financial assistance programs with drs and hospitals- the hospital has it, but I wish the drs offices would write me off financially. I can’t stay awake all day, but they want me to call in circles to get info for them or whatever. I would have way rather not have seen the infectious disease dr and just not had MRSA, but that’s how it was. sigh. I wish somebody would come in & organize & take care of my bills and stuff. Not paying them, but just being a secretary for them. I’m frustrated and disheartened and wanna cry. A lady who called from Social Security a couple weeks ago said I’d have an answer in a week or two. Nothing yet. We’re definitely going past week 2. I feel like I’m gonna cry but I know it’ll physically hurt. I feel like a bother to others and I’m stuck here cuz I can’t fly to take a break. Plus I can’t pay for anything anyway and I have to have my oxygen concentrators (portable & 35lb home concentrator) and so much stuff just to be able to sit inside. The worst is going to the ER and having to explain my rare disease and the medical professionals having to look it up. Ugh! I just keep hoping and keep not winning. I need so much help and living at home at 31 only adds to the emotional duress. Mom & I never have gotten along in the same house. I just wanna bury my face in someone’s shoulder & cry. Or better yet- go ride a horse or dirtbike or jetski or snowmobile or go skiing- anything that I can’t physically do anymore. Even playing with my dog or friends’ kids. Nothing fun. I guess I’ll just go have a lime popsicle and then I don’t know what. I’m already hurting from my chest being close to crying. Just can’t win every which way I turn.
Self sabotage is painful to watch someone you care so deeply for go through. I can only help so much, but eventually I stop ignoring the sight of my heart being thrown in the mud and tap danced on again and again with taps on stiletto heels… Then once that poor heart is nurtured back to health, cleaned off, fed, tucked carefully into bed… They come barging in saying they’re sorry and I hand over my heart once again, hoping that this time they’re being honest, that I am worth loving- worth being loved back. But maybe I should just take a long walk off a short, high place knowing there’s never anyone that I can trust to be there when I need them…
Funny how when you try, you can’t…
Well, at least for me.
When I don’t want to snooze, my body has other plans. Today? I seem fine on an hour and some good ol diner bfast.
This inconsistency is killing me!
Actually, the legions of lesions that stifle my breath,
They’re my enemies.
The pain is no fun, I wish it would stop.
The shortness of breath and chronic fatigue- any takers?
And then there’s the history. Being honest has people wanting me off meds and questioning every move but it hurts & it’s not something that I can just “walk off”.
I guess they think I’m making excuses. But, really, I’m not running to them with every ache & pain,
Screwed by honesty, salvaged by spirituality.
Y yo tengo miedo de mordiendo,
No porque voy a estar muerta,
Pero tengo miedo del proceso…
Mis pulmones van a romper…
Voy a estar como pescado por la tierra- un pájaro en el mar.
No puedo nadar, ni estar de volante…
Solamente tengo mi miente para esa época…
Necesito aprender como estar bien sin mi cuerpo, estar contento conmiga…
Como deci Tori- “Aquí. En mi cabeza.”
(copyright 2011 Katey O’Donnell)
Glistening from so far away
Heavenly mystical miraculous beauty
“don’t obsess,” he says
“it’s more like infatuation,” I reply
Wonder, curiosity, connecting me more to… Well, actually, I don’t know to who…
It’s more like to what
To the wonder
To the pain?
Reality is fleeting lately
Jaded by pain
Enraged by control
By being forced into a bubble
What she doesn’t see… Is me.
My calling as I see of late
Writing, inspiring, infusing positivity
Fostering wonder, prodding curiosity
Encouraging a return to childlike wonder
Twirling like a ballerina,
Gymnastics, yoga, high heels and lipstick,
Dressing up to feel pretty
Bringing others along for the ride
Some days you gotta dance
Giving up just lets you cripple
Crumple, wither, lose hope and desire
My desire is to inspire
Leave a legacy
A chronicle of wonder
Maybe I’ll add St Elmo’s Fire…
Create with wonder
Eternal images, in sight.
In a breath, my breath was taken away,
Shoving me into this rabbit hole of sorts,
Feels like I keep standing on the trap door,
“Whew! Finally the last one!,” I say,
And suddenly I’m falling again.
In a breath (or lack thereof) my path has changed,
Suddenly my palm makes sense,
My life line becomes clear at last,
My health line splits in two- wassat mean?
Join me in my pondering…
It could be….
Hey, what about….?
Oh! I know! It’s gotta be…
Wait! Wait! I know who to ask!
Higher Power? Are you there? Is it time for me to know?
It’s time to sit back, the show has just begun,
It’s one of those like Sam’s play…
…the audience helps along the way,
Maybe written in pencil, but all decided,
Maybe planned since the beginning of time,
Who’s to tell?
Wanna join me on this journey?
Step on in, take a seat,
Sssh, the curtain goes up….