Aerosmith’s “I Don’t Want to Miss a Thing” #BecausePGH

Author: Vivid Muse  //  Category: Family, Too Long For Twitter

Silver lining, here’s one crushingly sweet song that has been on repeat on my mp3 player today. Especially sweet when you know who it comforts. (Newwwwp. Not me. Okay, NOW it’s a sob fest for me, because of GOOD reasons. And all y’all stop worrying about me, it’s stressing me out, lol.

Lyrics:

“I Don’t Want To Miss A Thing”

I could stay awake just to hear you breathing
Watch you smile while you are sleeping
While you’re far away and dreaming
I could spend my life in this sweet surrender
I could stay lost in this moment forever
Every moment spent with you is a moment I treasure

Don’t wanna close my eyes
I don’t wanna fall asleep
‘Cause I’d miss you, baby
And I don’t wanna miss a thing

‘Cause even when I dream of you
The sweetest dream would never do
I’d still miss you, baby
And I don’t wanna miss a thing

Lying close to you feeling your heart beating
And I’m wondering what you’re dreaming,
Wondering if it’s me you’re seeing
Then I kiss your eyes and thank God we’re together
And I just wanna stay with you
In this moment forever, forever and ever

I don’t wanna close my eyes
I don’t wanna fall asleep
‘Cause I’d miss you, baby
And I don’t wanna miss a thing

‘Cause even when I dream of you
The sweetest dream would never do
I’d still miss you, baby
And I don’t wanna miss a thing

I don’t wanna miss one smile
I don’t wanna miss one kiss
Well, I just wanna be with you
Right here with you, just like this

I just wanna hold you close
I feel your heart so close to mine
And just stay here in this moment
For the rest of time, yeah, yeah, yeah!

Don’t wanna close my eyes
Don’t wanna fall asleep
‘Cause I’d miss you, baby
And I don’t wanna miss a thing

‘Cause even when I dream of you
The sweetest dream would never do
I’d still miss you, baby
And I don’t wanna miss a thing

I don’t wanna close my eyes
I don’t wanna fall asleep
‘Cause I’d miss you, baby
And I don’t wanna miss a thing

‘Cause even when I dream of you
The sweetest dream would never do
and I’d still miss you, baby
And I don’t wanna miss a thing

Don’t wanna close my eyes
I don’t wanna fall asleep, yeah
I don’t wanna miss a thing
I don’t wanna miss a thing

 
#BecausePGH

Hilarious to Me: Drunk History’s Second Season – NSFWoK!

Author: Vivid Muse  //  Category: Cool Links / Clicky Linky, No Whining, Too Long For Twitter, TV

A few years ago, we came across Derek Waters’ series called, Drunk History, on the web.

It’s now in its HILARIOUS second season on Comedy Central. It’s lost a bit of the charm of the original, but have more than made up for it in other ways.

And after just watching a Daily Show interview with him, I’m happy to say, that he can at the very least, very convincingly play the humble and thoughtful guy.

 

Check it out, and here’s a link to my original posting from April 7, 201?.  It will hopefully explain WTF I’m talking about, lol.

 

A Loss, A Wedding, A Baby and a Donate Button

Author: Vivid Muse  //  Category: Hauntings, Kids, Soulful, Too Long For Twitter, Whining

WARNING – EDITED but still rough draft, LMAO!!!
*Note, I have no time for spell-check. Apologies, I’m doing my best. Derp!

THE LOSS

Patrick G. Holyfield, passed away on August 20, 2014. Less than a month after I knew that long-growing cancer had spread to a secondary organ. Less than 2 months since he started getting tests done (beginning of July) because he wasn’t “feeling well” and had “fatigue.”

He chose to leave this world on his own terms, fighting for those he loved, especially his children. His bravery was and remains EPIC in my mind.

 

*You can click anywhere above this note to go to the GoFundMe.com/PGFund to make a donation.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

THE WEDDING DAY

After a mad dash to the Sonic for a grape slushie and a greasy burger, we went next door to Super Target, because it had everything on my list. With great glee I spent too much money because we were rushing to go home and look glamorous for my son and new DiL.

I didn’t look glamorous, here’s the only pic I took of myself. I wore a Target dress thing with purple and green, (my fave colors in the world). I only had foundation, blush and mascara on and looked like I’d been crying for a month, which I have. Every unattractive thing about me, is my badge of honor for how I was able to pull it together that fast. Because Love AND

And I wore the most badass shoes I could find. Gal and Eldest and Chooch, they know why already — because of the shoes Gal wore the first time we met.

They were surrounded by the six people they invited that could attend, and even the officiant clearly knew Eldest for a long time, somehow.

The service was beautiful. Perfect, even.

They spontaneously had it on a bridge, with his Dad’s parents, my sister and her husband, the officiant and his wife. Because I had just seen a family come together for a man they loved. It was… Precisely So. Perfection. Accidentally more awesome than a Royal Wedding.

I’ve asked the officiant for the readings he did, as part of the perfect soundtrack of the day. Every word was bonding them and healing me.

My beautiful and badass daughter is codename: Galadriel, Gal for shorter typing, lol.

Eldest may even be Naughty Bear again, since now we have another bear to love on. Not sure yet.

Sidebar: I didn’t even take pix. Um, yeah… ME. Too much joy, I couldn’t hold my camera phone. But my former Mother-in-Law had a camera at the ready and was snapping pix the whole time. I’m finding comfort in patterns, rather than saying “It’s the coincidences that are driving me crazy.” I can’t wait to see the pix she took, whenever I see them.  More on why htey had to rush off, later.

Apologies and gratitude to J.R. Blackwell. We scheduled to take engagement pix in June or July (?), when last week, they decided to do the wedding Sunday because they didn’t want to spend money renewing the Marriage License and it was about to expire.

I never even had time to contact J.R. to change the long planned shoot and ask if she’d be able to do a 6 pm wedding. I knew she couldn’t (or shouldn’t try), so I’m glad I never got to ask. It was impossible for me to wrangle the details. And this made it all about my kids, which they deserved.

Praise Baby Jusus that they did! To survive this, I am crying, breaking down and grieving. I got to laugh and love and cry from joy.

I shall contact you soon, J.R. I want, if there’s a way, to do their shoot in Philly. Eldest, Chooch and I love that city, partly because of those we love that live there. Also, because we want to share Philly (and you guys!) with Our Gal.

THE BABY

The wedding was LONG planned and long-delayed when they discovered the pregnancy, and they went (and made us go) on the cheap. Because a baby is coming, and they know what that means — money and lots of work.

If a plane crashes on my home and I die today, it will be knowing my Eldest son is happy in love. Son “LT” started his senior year of high school with plans laid for collete. “Crazy J” who needs a new codename now that he’s ten + years older than when I assigned that code name. All three sons need to pick new ones, I suppose.

All this to say that Little Blessings are all we need to survive, somehow.

It was true when in battle mode and now it’s true in recovery mode.

It is appreciated beyond words.

It is known.

And at midnight, pulling in front of my sister’s house the night before the wedding, my Grand Baby countdown to delivery app (Fuck yeah, I have one!) turned our little raspberry into a Green Olive.

New marriage.

New life.

New love.

Hope.

#BecauseLove
#BecausePGHolyfield
#BecauseLifeIsFragile

 

THE DONATE BUTTON TO DONATE TO CHOOCH AND VIV FOR FUND RECOUPING FOR FUTURE EVENTS HONORING Patrick G. Holyfield’s Children’s Trust.

Note: Anything left after that (HA!) will go to the ramp up of the newly revitalized biz, that Chooch will have to head, to get all these creative ideas out in the world. Vivid Muse Creations, LLC is open for biz, we just have our hands full right now to do work for payment. If you’d like to help but can’t, in an email addy to be provided soon, you can send offers of paid work, when we can get to it, in roughly 3 months to start. Maybe. It depends on what the Holyfield and our own families need from us at this time, as Patrick has inspired raw despair and the result is that lots of relationships in my own life are being healed. It’s a PG Miracle.

When I started the biz, it was completely inspired by the Podisphere and all the unrecognized (by the ‘Verse) creative geniuses. It was to be a harbor for those with creative talent that want to get their books published.

That was 2011. This is 2014.
Chooch and I recently decided to pull the plug on VMC, LLC, since he’s working so hard and can no longer do even the small amount of work coming in from two long-time customers. We were at our max, this was months ago, so never closed the business.

Now, we are considering opening it back up. The harbor needs some construction, but with the help of good people with leet skillz, I hope to make this a business that allows creatitivity to flourish and blossom and inspire others, the way the Balticon/Podisphere/Twitter & FB families inspired me to be brave enough to not only open it, not only promote it (humbly, you know me.), but broadcast it for the world to know. My big challenge to Myself.

Health Update in Three Parts: Three

Author: Vivid Muse  //  Category: Too Long For Twitter

Continuing on, thanks to the wean-down from Nucynta in order to start the Next Script (name given only after results are measured objectively, to prevent my results from being skewed by helpful folks sharing their experiences), I am now clearer in thought than in years, more so than even the change to Nucynta granted.

The pain is still overwhelming, along with all the other hindrances. It’s worse than when I was on Nucynta, but my energy level and brain power are boosted a bit. Because of this break in the fog, I’ve delayed starting the new medication. I wanted to keep my mind clear when Son and Nephew arrived and so I gave myself “more time to get a pain and symptom baseline” which in reality has been a stubbornness in giving up the slight boost to my intelligence. Nothing like what I could do in the old days, but wow, major improvement and just in time, as our summer is even more full than I predicted with our family and with our friends.

In spite of starting our taxes in January, I’ve still been unable to complete them and submit them. Now, I’ve been doing my own taxes since I was 20, so this is REALLY saying something. Back then, it was going to the library to get the forms and instructions and using pencil and a calculator before finalizing and sending them in. There was no software, there was only me.

So, I’ve decide to not start the new meds and risk the potential loss of brain power until I get this done. Pain, I’m used to. I’m just not willing to give up my brain function without a fight.

The benefits of this break have been immense, as I now have a new baseline, my memory is stronger, although I still rely on several visual tricks for both short and long-term retention. I’m also hoping to get the long-delayed cancer anthology passed to friends that have offered to help get it published finally, with more info to come later on this and long avoided breast cancer risk assessment underway. I’m only three years from Mom’s age on her first diagnosis, after all.

In truth, I’m truly struggling to trade out the pain relief for stupidity. The things over the last few weeks that I’ve been able to assess have been mind-blowing and life direction-changing. I’m terrified to take the new pills that wait for me on my nightstand. Just a few more days, maybe a week? After almost five years, productivity is kind of addictive, even if all it means is that I get a complete load of laundry down in one day instead of three. Or wrangle simple details and planning in less than a freaking month of complete forgetfulness. Now it’s just persistent and that little relief is like an addiction.

As my first actual addiction after the thousands of doses of countless medications and treatments I’ve taken, I’m pretty happy. Physically excruciating, but spiritually uplifting and I am so grateful to have followed my instincts on this and had a sunbreak, so to speak.

Yes, I will begin the medication on Monday to get back on the treatment and resolution path and hopefully the new medication won’t have any of those gnarly side effects. Maybe this medication will work! But first, I gotta get some things done without it taking two years.

For now, I’ll be grateful for what I’ve got in my husband and sons, their health, safety and happiness. The rest is icing on the cake.

It is indeed a Brave New World, even if briefly. But I will not forget what is shaping up to be the last long summer visit for the Grands. There is simply too much to be “present” for and enjoy these once in a lifetime events.

 

Sia’s Chandelier, Because “Tomorrow” is Recovery Day

Author: Vivid Muse  //  Category: Health, Mental, Music, No Whining, Soulful, Too Long For Twitter

 

Chandelier by Sia

Just saw this video and was drawn out of hunting airline bargains for T’s summer visit and tha socialz from Balticon 48. The song grabbed me and then the video compelled me to rewatch from the beginning, and WOW does it resonate with me! Only after the second viewing, with tears running down my eyes, did I realize I should read the lyrics because I was clearly having a visceral reaction, so I decided to find them and when it resonated further, I chose to steal a selfish moment for this post.

The next thought, thanks to my “distortion filter” (per T-Pain, my nickname for my therapist)? What if I had continued in dance instead of wussing out when the toe shoes came out? Maybe staying in motion would have prevented at least SOME of my health issues. Did I cause or worsen my current and chronic pain conditions? Or did I prevent an earlier onset? Was I too undisciplined for too long? Luckily, since I’ll likely never know the answer, I’m letting the blame and guilt go on that since I can’t go back in time to fix it.

I feel a physical yearning, a hardly irrepressible urge to leap up and start dancing (I was sort of a dancer in my younger days.). I have to immediately squelch it because of Health Blahs. It resonated so deeply that I’m sharing both the original video, the artist’s lyric video and the lyrics, in case you don’t want the data hit to watch the videos.

Note that I specifically interpret “tomorrow” as what I call The Reckoning, or recovery day(s) I’m “prescribed” to take after stressful periods. Good stress or bad stress, emotional or physical, it doesn’t matter the type of stress or stressor, they all deplete my body to the point I can’t control it. Adrenaline and cabin-fever-driven needs to spend time in the sunshine (or moonlight) with friends and/or family are my favorite of all the stressors.

“Chandelier”
by Sia

Party girls don’t get hurt
Can’t feel anything, when will I learn
I push it down, push it down
I’m the one “for a good time call”
Phone’s blowin’ up, ringin’ my doorbell
I feel the love, feel the love
1, 2, 3 1, 2, 3 drink
1, 2, 3 1, 2, 3 drink
1, 2, 3 1, 2, 3 drink
Throw ’em back, till I lose countI’m gonna swing from the chandelier, from the chandelier
I’m gonna live like tomorrow doesn’t exist
Like it doesn’t exist
I’m gonna fly like a bird through the night, feel my tears as they dry
I’m gonna swing from the chandelier, from the chandelierAnd I’m holding on for dear life, won’t look down won’t open my eyes
Keep my glass full until morning light, ’cause I’m just holding on for tonight
Help me, I’m holding on for dear life, won’t look down won’t open my eyes
Keep my glass full until morning light, ’cause I’m just holding on for tonight
On for tonight

Sun is up, I’m a mess
Gotta get out now, gotta run from this
Here comes the shame, here comes the shame

1, 2, 3 1, 2, 3 drink
1, 2, 3 1, 2, 3 drink
1, 2, 3 1, 2, 3 drink

Throw ’em back till I lose count

I’m gonna swing from the chandelier, from the chandelier
I’m gonna live like tomorrow doesn’t exist
Like it doesn’t exist
I’m gonna fly like a bird through the night, feel my tears as they dry
I’m gonna swing from the chandelier, from the chandelier

And I’m holding on for dear life, won’t look down won’t open my eyes
Keep my glass full until morning light, ’cause I’m just holding on for tonight
Help me, I’m holding on for dear life, won’t look down won’t open my eyes
Keep my glass full until morning light, ’cause I’m just holding on for tonight
On for tonight
On for tonight
‘Cause I’m just holding on for tonight
Oh I’m just holding on for tonight
On for tonight
On for tonight
‘Cause I’m just holding on for tonight
‘Cause I’m just holding on for tonight
Oh I’m just holding on for tonight
On for tonight
On for tonight

 

And NO. I’m not relating “drink” to alcohol. I’m referring to all the tricks I use and the “mask” I try so hard to use to hide it when the pain gets overwhelming because it’s such a downer for those around me.  Besides, I have to take heavy medication to be able to leave the house/hotel room at all, and it makes me feel just as wasted as anything. It’s just without the pesky side effect of triggering my death by adding alcohol to prescription medications. You know it’s serious when I repeatedly turn down anything but a sip from Alchemist Extraordinaire, John Taylor Williams, aka @wryneckstudio on Twitter.

Instead of “drinks” or alcohol, I’m actually referring to fun, friends, love, giggles and adrenaline, and what I choose to sacrifice with a “rally hour (or 2)” for less resting and more socializing or for actually being coherent for the Beyond the Wall Live! show at Balticon and actually remembering the experience this year through a better balance with my medication and minimal alcohol, if any.

(Tip: Carry a full drink with you to prevent friends from surprise-buying you old faves. It seems to only occur to people when you have an empty glass! I have such generous friends that this is actually a problem!)

Miss you already, Balticonners, and all the chandeliers to swing from. <3

Chandelier by Sia
(Video with lyrics)

My Nephew and Crohn’s Disease

Author: Vivid Muse  //  Category: Family, Health, Too Long For Twitter

Quick note: This post was long planned, but finally edited and posted becaue a remarkable woman is raising donations to help find a cure for Crohn’s Disease and Colitis. Please consider giving money as thanks for her getting her ass out there to raise funds for a charity that fights these truly terrible diseases.

You’ve heard me whine about missing my nephew since he moved away, but before that, some of you kind folk in Twitter remember that he found himself on the horrific path of Crohn’s 5 or 6 years ago, and I remain grateful for the prayers and kindnesses that buoyed us through that scary time.

Remembering his then-little body (I was still taller than him) wracked with pain to the point of near-delirium, before and after the surgery haunts me still, but his treatments have given back much of the life he could have easily lost. The picture below is him from around the last time I saw him, last summer. He is strong like bull, thanks to charities and researches fighting to give folks like him a long and far better life.

My Nephew Taking on the World, Virginia Beach, VA, 07/11/2013

We spent so many happy years with my nephew and his older brother being nearby and nearly-inseparable from my two sons from my previous marriage. And while I miss him greater than he could ever understand, I remain ever-gratified that he’s truly been thriving in his newer environment. He’s grown healthy and strong and next month he graduates from high school, already with a partial scholarship for college in the Fall!

He’s been playing football and basketball at school, and has been an avid and talented skateboarder for eons. He’s lucky that the medicine is still helping, as we’ve been told that someday it likely won’t anymore and that is a terrifying thing to contemplate. And lookit, I don’t care how small a centimeter is, when they take 11 of them out of a child, they’re huge.  I remain grateful that his body has been allowed to grow tall and strong, as he refused to embrace anything but a full life with his disease.

You can see why he’s one of my greatest inspirations, no?

And guys, he’ll turn 18 in three months, too. We had no idea if we could hope for more than a year from his first surgery, let alone the on-going treatments (*knocks on wood*). And while I wish he didn’t remember the pain back then or from ongoing episodes, I remain grateful that he is vigilant, in part from the memory that I would protect him from, if I could. 

I’m biased so this donation is a no-brainer for me, other than wanting to give far more.

But still, if you can, please get your wallets out, if not for you or someone you care about, then do it simply to pay it forward since none of us have any guarantees in life. Every little bit counts and the minimum is a mere $15.

Please?

Doc: Avoiding Isolation Via the Internet? Me: Check.

Author: Vivid Muse  //  Category: Health, Mental, Too Long For Twitter

 

Going through yet another cycle of appointments (quarterly, unless something new happens), most for pain management since there is no cure for my fun bag of Health Blahs, I am was reminded how off-handedly I answer the most recent time I was asked that question, for the second time in two months:

Her: “Have you been staying social to avoid isolation and depression?”
Me: “I have that covered with social media and podcasting, when I’m able to do it. For years now.”

I’m eternally grateful that Chooch took a biz trip when he did to Abq and met up with old friends that introduced him to City of Heroes (MMORPG). We both (and two sons, for a bit) started playing and eventually started podcasting about. Around the same time, we started our family life podcast, or journal of what we enjoyed and disliked and in general, our lives were like up until 2011. Due to other creative projects, they have slid down the list of priorities, but we’ve been talking about doing them regularly again for awhile now. (Mostly me, as Chooch has other interests of creative expression.)

But for those things, City of Heroes and Podcasting, I wouldn’t have, what, 80% of the people in my life, many for at least six years. Relationships have ebbed and flowed, but I can’t imagine having gone through all these health problems and um, let’s say challenges, without the social network I already had in place in the local (and distant!) podcast community. I have friendships that have changed my life, utterly, and while some drew more blood than comfort, I still treasure them. I’ve learned a lot about humanity.

So now, reflecting back as I am on the perch of attempting reboot when my neurological issues may result in failure in ability to host again, rather than co-host, I am just very VERY grateful for the adventures, memories and giggles in my life. So whether I’m successful or not, it’s something that I want to do, whether or not I’m ever physically reliable enough to guest at conventions again or not. This isn’t branding, I’m not selling anything (can’t think of anything, lol!), this is just me, so I don’t have to worry at all, beyond the parental concerns.

And I have some very sweet friends that encourage me to do Girls Rules specifically, and I always have ideas hopping for that one.

Happy Love Day

Author: Vivid Muse  //  Category: Chooch, Family, Firsts, Too Long For Twitter

First of all, first post from new (to me) hotness! Chooch refurbished a laptop for me that is the perfect balance of keyboard + larger screen for big font (I tell ya, meds these days…) and is waaaaay more light weight than last. But this also means that I no longer have The Penguin, which saddens me, but this really does serve more of the function I need faster. It also frees Chooch up from constantly helping me fine tune with cross-over programs for Linux.

My review of the Linux machine? Raving five stars of awesome. It only crashed twice, and that was surely due to overheating, a frequent problem with that laptop.  At one point, while working the photo archive, I thought I lost over 1k (or something equally horrifying) of photos from our recent trip to Hawai’i when the machine froze. Normally, I would have had an instant panic attack, but I remember the change to Linux and I immediately decided to put the laptop down and trust in The Penguin.

When I came back an hour or so later, it had finished processing and the photos were safe. If it had done as it had been running before the Linux change, the pix would have been lost after a blue screen of death and we’d have had to start prayers that Crashplan had indeed backed the batch up for retrieval. I loved it, but felt pretty useless with it. I was afraid to muck around and make it stop being reliable.

Hubby surprised me with the refurb, when I hadn’t even asked to switch back and I’m guiltily grateful. If I need a program or Chrome extension, I know I can find it for Windows. And with my memory issues, shortened attention span and brief computing time available before a migraine sends me off, these are tremendous benefits for the woman I find myself to be these days. But I do love supporting the “under dog” or “working class” over the hugely corporate The Man or his politically correct off-shoot. The first thing I do if I can reclaim some brainpower is to rock Linux. The second is likely yarn bombing the world.

 

Now, on to the mushy stuff! Happy Valentine’s Day!

Today is also my beautiful Li’l Sis’ 10th wedding anniversary! While we all still would have been excited, the health problems my baby (9 years younger) sister has had since last summer have me EXTRA SUPER HAPPY TERRIFIC that she is here with us as she and her amazing husband celebrate their love. I’m so proud and grateful that she’s doing the necessaries to live a healthier and longer life.

Our weddings are only 3.5 months apart and I’ve always felt a special bond with them as we were both at the marital starting gate at (nearly) the same time and I love sharing this with her.

As for my own valentine, Chooch, here’s our wedding day selfie, 10 years before it was called a selfie. New hubby and I snuck off to the front of the boat for a private snuggle and already traditional self-shot together.

Chooch said I should have the purple princess dress (I’d planned on plain and low-key, since it was 2nd marriage for both but fell in love with a bridesmaid dress while shopping with my Li’l Sis and Mom for LS’s wedding dress.).
Mom said I had to have the tiara to go with it and bought it on the spot.
I’m still so honored that they thought of me as royalty on that nearly perfect day. If only J (and even more family) could have attended, too. #StillVeryBlessed

Chooch, my love,
We spun just as much chaos back then and it was GLORIOUS then, too.
It was the happiest of days with you, and we’ve had so many since then and an infinite number still lie ahead.
Please, remember how much I love you when I’m kicking your ass during our gaming date tonight.
XOXOXO
~Me

I Never Did Get the Hang of Thursdays, aka Health Update

Author: Vivid Muse  //  Category: Health, Too Long For Twitter, Whining

I went to write a brief message in Facebook, and it turned in to something I’d rather not force in our kids’ faces. They likely know where I blog, so if they want to, they’ll see this. They don’t need me to trigger their worry and if they want to know more, here I am. ‘Sides, my stuff isn’t terminal or life threatening, it’s just pain.

So, Thursrday was ridiculous. I had an appointment with my neurologist about 50 miles away. I woke in a ton of pain, but I only take my daily meds when going to a pain specialist (neuro). I want them to see me at my base level, with no pain breakers. I forgot how hard that was, as physical or psychological stressors wonk my body/brain out, and I ended up tossing my cookies on 95 south. Luckily, commuting to DC during two pregnancies long ago perfected my technique, and a short while on the shoulder later, we were back en route.

The nausea I’ve been sporting since the new pain relief the rheumatologist patched on me has been pretty hefty. I underestimated the amount the nausea was masked by the other medications. Because we spend a LOT of time in the car, I had the necessaries for cleaning myself up and off we went. Due to our delay, there was a gnarly bit of drama at the doctor’s office danced on my exhausted last nerve, but there is a ray of hope there, although not in regards to my treatment.

I was hoping for another script of the expired, Final Tier of pain relief, Soma. That’s the one that lets me sleep, immediately, regardless of the pain level AND wake woozy, but feeling rested. It’s the last resort/emergency chute in my pain relief options, because being unable to sleep because it hurts too much is crazy-making. Immensely crazy-making. No go, as he’s concerned about them with the muscle relaxer in my medical bag.

I’m grateful to not risk overdosing, but not knowing if the impossible pain may happen on the patch is scary. I’m sure I’ve mentioned that I carefully rotate the medications, and only when in Hawai’i did I allow myself to take the max allowable. I fear addiction and/or accidental overdose, but without any safety net? Crazy-making.

The treatment option he was pushing most was injecting Botox into my head, and the gesturing he did seemed awful and my neuro ship sailed. That pretty much describes the sensation I feel when something bumps up against my neuro triggers, it’s like a boat launching, a slow but lifting, lurch. I have to proactively halt the trigger or I’ll be flailing. For similar reasons, needles are a problem for me, and fainting has occurred (Have I mentioned how much I hate being swoon-y? Well, I fucking do. Being fragile blows.)

Doc was getting more and more a boner about a place in Reston that does the botox treatments, and I finally had to stop him because I was getting worried about the fainting sensation coming on. By that point, I’d been up six hours, after almost the same amount of sleep and almost all of those were involved in some sort of panic attack.

I was exhausted.

I finally told him that the thought of those needles filled with botox scared the shit out of me. He did nothing to reassure me and launched into the risks, and the whole thing leaves me confused. I have to man up and overcome the fainting issue (if I can) before I can take on acupuncture, let alone dry needling (different from acupuncture? more research once needle issues wrangled.) OR stabbing botulism into multiple locations in my head every three months until ???. AND a second opinion, as the risks are not insignificant.

But the neuro’s final prognosis seemed to be to be that we (my rheumatologist and me) need to make the Fibromyalgia pain stop so I can stop taking all the medications that cause migraines, so he (neurologist) can treat the migraines themselves. I had to remind him that I was sitting there because of the migraines that were occurring before the Fibro flared up and the pain meds for it started. My husband and I went to talk migraines pain management and function restoration, and he kept routing back around to the Fibro meds.

Kinda pissed me off, to be honest with you. I don’t want to be on ANY of these pills. They are toxic and result in my having to have frequent liver check-ups. They make me sleepy and no matter which ailment I’m treating, they worsen the other side of the coin of my symptoms.

If I were going to get a magic wand waved, I’d also make the migraines begone, genius!

All those hours in the car took their toll, and while I’m grateful for the relief I know I got, I’m thinking twice about the patch long term. I don’t like not being able to take on the pain to be clear-minded enough to drive myself to get a prescription, or milk, or whatevs. I can’t just snatch it off and on, like I can skip pain meds to be clear minded in the hopes of driving. It doesn’t always work, but it makes me less nuts. Independence is my fight against isolation, dammit. But I’m learning about the balance of pain and clarity in winter and the lesson is? Kaua’i is much kinder to my body in winter than Northern Virginia is, but this is where I live. Make it work. Make it so.

Another lousy thing is that my olfactory senses are apparently off the hook, so all I smelled all day was the odor of the morning’s roadside purge. It soured my mood for sure and kept the nausea close by all day. But…

Silver linings: My Viking. A golden blaze of awesome glory in the driver’s seat, Chooch. The talking, hand-holding, the positive but stern looks necessary to strengthen me, sharing media, our fussing, and our planning our way through a myriad of complications and giggles. There are always giggles.

Life would be mighty dark without the golden light he radiates. Even when we disagree, I know he has my back. And he knows I have his.

While we were in the area, we got to see our Eldest son. He has a place with his best friends, and we drove over to say hi before he had to go to work, started managing some collegiate stuff, deliver some new linens (hush, I’m his mom) and finally got to meet their new kitty, Mowgli. I love the name, since Eldest loved Jungle Book so much when he was wee. Sweet, cuddly kitty that likes to play rough suits the house to a “T” (tee? Meh. You know what I mean, right?). No pix, as I forgot my phone in the car. (Derp!) But I swear it happened! <3

I didn’t make the eye appointment, but did manage to see a friend who’s on a rough road. You know me, I’ll happily keep squinting to share a hug.


Virtual hugs, prayers and/or kind thoughts for all those that have muttered,”Fuck cancer.”

On Camera? Hmmm…

Author: Vivid Muse  //  Category: Too Long For Twitter

I just picked up my new script, a 7 day pain patch. It’s to help with pain, since no other daily preventative has worked. At least I don’t have to choke down more pills. This takes the place of a 3-a-day pill I was on until November, when the lack of impact on my shortened wean off (Thanks, Furlough! I had a refill right after it started, and at $90 a month I decided to see if it makes a difference. New baseline, which I was due for anyways.) made me realize it was causing more side effects than symptoms it was treating.

My pain has increased since then, steadily, as we moved from Fall to Winter. We have been in the grips of a record-breaking winter in our area and the pain in crease in the cold weather has been immense.

So, new pain meds are here and as I open the pack and I jokingly said to Chooch that I should apply the patch after we record our Consumption ‘Cast (with friends P.G. Holyfield and Christiana Ellis) youtube episode since I have no idea what the side effects may be. C’C is a weekly gabfest about all the media we are or aren’t consuming. Tonight we have J.C. Hutchins on, and I can’t wait to chat with him – he’s always so fun to talk to and it’s been too long. He’ll be talking about his body of work and his new project, The 33.

It occurred to me that, for reals, I had better read the possible side effects before applying.

I read them aloud:

  • Drowsiness (zzzz…whut?);
  • Euphoria;
  • Vomiting;
  • Restlessness;
  • Headache (already have one, lol);
  • Dry mouth (thanks, Vic!);
  • Low blood pressure (prone to);
  • Blurred vision (thanks, nonexistent glasses!);
  • Feeling of general discomfort.

Chooch’s response? “So, thirty minutes before we go Live, right? You gotta show that.”

That’s love, guys. That’s love.

Sorry, no can do. My inner fan girl gets to come out tonight with J.C. on the show. He’s my FIRST (podcast novel AND trilogy author), EVAR!

And really, those dragon boots. *swoon*