Second Daith and A New Tattoo

Author: Vivid Muse  //  Category: Chooch, No Whining, Too Long For Twitter, Video

There was supposed to be a vow renewal ceremony with our full family and closest friends. Then the guy that we long planned to officiate moved on to greater adventures, beyond this world. 

Still, I really wish you were here, P.G. I know any words you’d haven given us would have been perfectly grumpy. And perfectly wonderful. 

We figure he’d approve of our revised plan – saving vow renewal ceremony/reception money to spend instead on a spontaneous, bonding-heavy, anything goes vacation with our kids and family. We did that a few weeks ago, and I lost yet another wedding bond.

I have been using cheap fake wedding rings for years, since I lost my engagement ring. Big, chunky and silly, but very clearly representative of being married. The real deal is locked up. Fibromyalgia “fog” and medications to fight pain make my memory horrible. No matter how crucial the memory, I have no power over whether I retain it or not. It’s truly crushing sometimes.

So FINALLY, before this big hop from the Blue Ridge Mountains to the Sandia Mountains, we’ve ensured that I can’t lose my wedding ring again. The original will stay locked up and safe for the duration of the move. It’s perfect.

 The design we settled on is a “rupee” (gem) found in the Nintendo game, Legend of Zelda. It’s outline-only, in dark purple. (Purple is my favorite color, and my skin grabs it nicely.) Plus, dodging black for now gives me more options later.

No,
Chooch did not get one because he’s our financial provider and who knows when employers that can’t see beyond the exterior may come in to play?
But he designed it along with me, just like our original wedding rings. #DayJobSecurityFTW #FamilyLife #FamilyLove
Now, because it’s a finger tattoo, it will blur and muddy over time more than other tattoos, as is often reported. Since that news, it’s taken us years to decide on the design, deciding to embrace that imperfections inherent, rather than abandon it something we love.
 
With this in mind, wanting more than just the rupee itself, there are little dots and bigger dots making up a disconnected “band” below the stone.
 
Happily, over the years together, we’ll get to watch as the natural process of aging blurs the series of dots into a strong, solid yet imperfect band. The longer we live, the stronger our bond and our band, as has happened all this time.
#ArmouringUp#EndingThisEra #StartingANewOne #FinallyWedding Ring Tattoo and new daith piercing. +200 to armour and mystery roll on migraine relief.

A Bold and Dashing Adventure, aka, We’re Moving to Albuquerque!

Author: Vivid Muse  //  Category: Family, Firsts, Friends, Health, Household, Kids


Brace yourselves, kittens, Chooch has been officially notified of his reassignment to Albuquerque, NM, and his start date is October 2nd!!!


The move will get us so much closer to Chooch’s 16 y.o. Son. (We haven’t made it to Cali yet, but we’re finally getting closer!)

Added bonus? Along with Chooch’s Son, his Mom, Dad, Step-Mom, Sister and her Husband all live in the same area! Where we’ll live will actually be close enough for a road trip to soooo many beloved family members (and their babies!), including our own GrandSon Little Bear! We are so very happy, life’s gonna get so cute again!

It should be a less-stressful position for Chooch, that we feel more fulfilling and less draining., and by all accounts (incl doctors), the region would hopefully improve how I feel with my health blahs. We don’t plan on living there forever, but we’re so very excited for this new adventure!

Locals, we’re moving in mid to late September, which is VERY soon. We want to see as many people as we can while we prep to move and continue to purge down our items. If you want to gather before we move, please let me know. I’m hoping to do little gatherings to see as many as possible.

It’s a very big change, but with our resident middle son and our pup Kaylee going with us, we are BEYOND excited at this new adventure!

I got this in a fortune cookie the night before we got the big news!

I got this in a fortune cookie the night before we got the big news!


Nothing but Time by Metric, Video w/ Lyrics & Thirst Day Prep

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

EDITED with proper linkage. This is why I don’t get paid, folks. *deep curtsy*

My current earworm, hide the ad pop up for the lyrics, or scroll down and read them. (I know I share a lot of Metric songs, but I made sure, none have repeated. I don’t think 😉

And I’m speechless to say that my life is a damned embarrassment of riches, some days.
It’s so very humbling.
Thanks to all that keep my/our lives/life on the bright side.
Share love and life into the circle of love that surrounds you, and by Glob’s calculator, they will surround you, too.
It’s a big world, and I’m grateful that I was taught not to limit it, superficially (race, religion, gender identity, hair cut, boxers vs briefs).
My whole life, I’ve loved the idea of the melting pot, all of us coming together. But that’s not the reality.
I had to learn myself to limit the artificial, because it inevitably hides the darkest of depths that will cause harm to me and mine now that I’ve got a “delicate disposition” (GLOBDAMMIT.)
 
My heart aches for those lost from this existence, but they’ve made their mark on me, strengthening my empathy, teaching me that I’m worth loving and not to waste time on negativity. Love is all you need.

I’m currently focused on a project we are involved in thanks to our dear old PG. So many things I’m grateful to him for, but the Durham family is high on the list.

If you want info on the project, there’s this party tomorrow night, in Greenbelt, Md.No charge and you get to see James’ new indie short film, “Thirst.” Clicky linky for info on the Facebook Event page and pix that various folks on the cast and crew have been taking, including pix taken by me. It’s amped up my desire for my photo project in time for Balticon, but who knows? I’m still trying to get the anthology done.

#HowDidWeNeverSeeMetricTogether #SweetSixteen #SilverLinings #BecausePGH
 Anyways, the lyrics from AZ lyrics, as usual.

“Nothing But Time”

Steal once
Pay twiceAdvice to heed
I won’t
I mightAdvice to heed
Steal once
Pay twice

Advice to heed
I won’t
I might

Advice to heed
Steal once
Pay twice

Advice to heed
I won’t
I might

Advice to heed
Steal once
Pay twice

Advice to heed
I won’t
I might

(Advice to heed)

You always said that love was not enough
Always on the move

(Advice to heed)

And even though we long to shut it up
We could never choose

(Advice to heed)

Now we know there’s nothing awaiting us
Better than the truth

(Advice to heed)

I wanted to be part of something
I got nothing but time
So the future is mine

(Advice to heed)

I wanted to be part of something
I got nothing but time
So the future is mine

(Advice to heed)

I wanted to be part of something
I got nothing but time
So the future is mine

Memories with Sara

Author: Vivid Muse  //  Category: Family
Life changed direction and we grew apart. My memory sucks and looking at pictures is breaking me, so instead I’ll share memories on constant loop in my mind since last night.
Simply put, verbs from when we were young, and from when we were sisters and life stretched out like infinity in front of us.
  • Sharing eyeliner and makeup tips in the locker room after gym class.
  • Crushing on the same boy in high school. I can’t even remember his name or what he looked like.
  • Reconnecting after separately moving halfway across the country, closer than ever before.
  • Standing as a Feminist with a captial ‘F.’ You were the first person my age (early 20’s) to loudly proclaim it, and until then, I didn’t know you could just do that. I thought Gloria Steinem had to induct you or something.
  • Being the only person who would go see Henry Rollins’ spoken word show with me at DC Space in the late ’80s. You didn’t even like him then, you just knew how badly I wanted to go.
  • Overcoming the overturned Big Gulp all over our laps on the drive from Manassas. We decided we were women that put experience over appearance and went anyways.
  • Encouraging me, even after all that and the departure delay it meant that night, me to walk up to Henry after that show and talk to him and get him to sign books. I think it was my first artist moment and remains a favorite.
  • Being pen pals while away you were away at college because Facebook didn’t exist yet. We called too, but didn’t we have great fun in finding/sending silly cards?
  • Ganging up on me, along with my Mom, as we crawled our tortured way through DC and rush hour traffic in a soft-top Jeep Wrangler during a horrible rainstorm. Y’all wouldn’t stop until my crankiness finally snapped and I cussed you both out. When Mom said, “Well, bitch, bitch bitch, no one likes you,” we all started laughing and couldn’t stop for the whole ride home. I finally stopped caring about how late we were and we had such a great time, as literally no other trio could have done.
  • Surviving that one special first diaper change together, resulting in us both in tears on the floor laughing and crying because it wouldn’t STOP.
  • Laughing too loudly, as ever, on a harrowing road trip to Maine in a blizzard at night.
  • Using a cassette case on that trip to scrape snow from the windshield, without gloves.
  • Learning from stupid shit like that on how to be prepared and a bit more grown-up.
  • Loving all life, animal or human of any designation.
  • Sharing that love, ever so gently, with a fuzzy caterpillar found on a tree with the birthday boy and cousins. It made the mountain of gifts at the child’s birthday party invisible, during that magical time.
  • Teaching respect for life, by just as gently returning that caterpillar to where he was found, and explaining why you did so to the children listening so intently.
  • Making memories as you made gifts of homemade cinnamon/sugar butter as a kid’s activity.
  • Spending 3 hours in traffic to show up and take me out for ice cream on my birthday one year, just cuz you loved me and said I deserved spoiling and wouldn’t take no for an answer.
  • Comforting, with love and laughter, as my Mom fought her first battle against cancer.
  • Holding my sons in hospital, shortly after their births, instantly and forever an amazing and devoted aunt from when you first gazed on them.
  • Riding, your whole life, on the backs of horses you loved so much. The love and peace and special smile that would spread across your face when nuzzling was enchanting to watch.
  • Singing, louder than the stereo turned all the way up with the windows down. The song below sprang to mind and sounded so sweet with your voice that I won’t seek a meaningful song or read the lyrics of the one below for deeper meaning.
 I’m so grateful of all the other verbs, nouns, and undefinables that we shared, all those years ago.
Rest easy knowing you’ll never be forgotten and will always be missed and loved. Even with my failing memory, it’s simply not possible, darling one.

#EndCancer

Our New Nest, A Year Later

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

Yesterday was exactly one year from when I announced our move into our “new nest” which ended up being called The Seuss, for silly reasons.

I was too exhausted from fighting a very persistent migraine to write an update, as we are now watching our oldest son, his wife, and their son pack their belongings to move out of state. It’s been a chaotic yet wondrous year, and I’d like to retain my thoughts today, just a few days before they hit the road.

We moved in with much chaos and many hidden fees. This isn’t terribly surprising in hindsight, since I’m not as smart as I used to be, at running households. Our life was so simple previously, I’d forgotten all that goes into the expenses of moving to another state, and Chooch was too busy working, commuting and moving things in prep for our move.

Little Bear arrived in early April instead of late March. He was the light at the end of a dark tunnel for so long that now he is simply the brightest star in a bright sky. He’s super cute, very clever, as strong as he is heavy, and is always looking for a reason to smile and laugh. In short, he’s my dream grandbaby.

My gratitude for being with them during this special time has not only grown, but it’s far more far-reaching than expected, after being able to include dear friends into our family experience. Having all those infinitely helpful and kind friends was very comforting at a time when nerves were exposed and raw and different medications were being tried out for pain relief.

Although we knew this was going to happen, I find myself surprised that it’s actually happening now. Already. I’ve taken thousands of pictures and hours of video to see me through missing them, tho and I’m hopeful that the kids will send pix so I don’t have to launch a drone near their place.

But in all honesty, I’m reaching the end of my usefulness in assisting in caring for my grandson. With the chronic pain health blahs, there are frequently days that I can’t even get out of my room to see him, let alone be of a help to his parents. It’s heightened my sense of failure. Who can’t pick up their grandson, at six months, for Glob’s sake?!

Me. That’s who. And I’ve known it was going to spike when he hit six months, since 2 weeks after his birth. We were out with friends Billy Flynn, the Flynnstress and their six-month old daughter MJ. She’s lively and clever and active and quick to laugh and smile. I was shocked to find that I was barely able to hold on to her and gave her back way sooner than I wanted. Shortly after that the kids nailed down their plans to move, and what was a heartbreaking and very deep blow due to their upcoming distance, well, later it strangely made it easier for me to process the kids leaving.

Little Bear weighs 18.6 pounds right now, which means it should be no surprise that I frequently can’t lift him. And when I can, it’s grown briefer and briefer as he’s thrived and grown. I’m “disabled” so that’s expected. Except that he’s my grandson, so I pick him up when I shouldn’t and sometimes have to call for an assist. That’s never a problem because I made a rule at the start not to leave me home alone with him. Between pain and medications that turn me into a zombie to allow me to get in motion to help, it’s just not safe. Even after six months, I’ve only carried him on the stairs once or twice. I made these rules with great sadness and shame, even though it’s not my poor choice but rather, my debilities, but it is for his safety and I do have a lot of trouble with stairs.

When the kids move, they will have multiple families nearby. They will have the kind of help that we can’t give them very often, boots on the ground, in the trenches, help. Naughty Bear’s injury and recovery continues to plague him and will for quite a while. He’s being smart and heeding the caution of doctors, and that’s all a mom can ask. They both have jobs waiting for them and our Galadriel (our son’s wife) will have health insurance again, finally.

Gal’s parents and sister will be nearby, in addition to Naughty Bear’s family in the area. Having been her age when I had my first child, I know how important those bonds are, especially with your mom, and I’m so glad they have been able to push through an unbelievable number of challenges to get back to her home state. Her home sickness has been great and she just needs time with her family, and Little Bear gets to meet them all, finally! Only Gal’s mom was able to visit for his birth, and they excitedly await his arrival. Knowing how great LB’s other grandma is makes it way easier to let them drive away, too!

We hope to visit them next spring, possibly around SXSW time. I have a friend or two I hope to visit while we’re there, since I lived in Texas from ages 3 to 18. That’s if I can let go of Little Bear while we’re visiting. 😉

All of these things mean that it’s the right time for me for them to move, too. My frustration grows, as does recovery time when I’m stubborn. It’s time for the circle around them grow larger in their very own nest.

Chooch and I will stay at The Seuss for another 8 months, at least. We did such a good job on our house hunt last fall, we aren’t finding anything worth going through the effort and expense of a move for, especially heading into winter again.  It’s an especially bubbly-making decision, since our specifically non-specific house hunt landed us within 5 to 30 minutes from most of our dear friends when it used to be an hour or longer. The accidental blessing of location was purposefully again left out of the calculation, but much happiness was felt when we saw it’s the logical decision.

As for our former housemates, we haven’t done the baking and we’ve gotten the Wee Housies together with our grandson less than I’d hoped before they move, but the love remains. Seeing them healthy and thriving is almost as awesome from a distance, although we still need to do a baking party. They did make me promise, last month and I can’t wait to make it so!

Jen is doing great in her new life, and without our chaos in the basement. Sadly, she now has a new struggle, by way of a tragic downturn in her father, aka Elder Housie’s health. He now requires constant assistance and help, and being such a fiercely determined, up and at ’em type of man, it’s a pretty tough blow for him and his daughter. And it saddens me knowing that even if we were nearby, my help would be as limited as the help I give to the Little Bear. It’s another source of frustration, not being able to do things for loved ones, no matter how badly I want to, and I do love that man so very much.

As for being out of Virginia, it was definitely the right decision, even with the unexpected costs. It’s made the last year far more exciting, and being off those old roads ended up with us bonding more than we might have. So I find myself with the knowledge that Chooch and I made the right move for ourselves, a duo, and not just for our family. We’ve been tackling a lot of gnarly issues recently, and we’re only growing stronger and even have a plan to get us out of debt, hopefully. This is a huge thing for us, since my inability to work has had us in dire straits for almost 6 years.

So, with all these things in mind, I choose to end this post the way I ended that one, because I feel closer and more bonded with my husband now more than ever, I can easily again say to the future: Bring it on. We smiled and laughed and held each other at every turn, snatching up silver linings as fast as we could and plan on continuing!

Me, Chooch and Little Bear at 5 1/2 months, 09/2015.

Full Contact Grandparenting

 

Naughty and Little Bears

Naughty and Little Bears

Kaylee the Stalker

Kaylee the Bear Stalker

Day at the National Zoo!

He’s the MOST fun to play with, even when I can’t pick him up. Rawr!

 

Be well!

Hair Donations, Finally!

Author: Vivid Muse  //  Category: #BecausePGH, Chooch, Fibromyalgia, No Whining

After our hair donations yesterday, I tried to figure out how to write about it. I knew that to some, it would sound weird, no matter what, so after a lot of revisions, I’m simply writing it as a letter to our best friend, P.G. Holyfield. We lost him last August to a horrifyingly fast-growing and hidden cancer.  I’ve probably written it poorly and with bad punctuation or pronouns, but I don’t have time to take another pass.

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

Chooch and I found it to be complete and total bullshit that you were diagnosed with cancer and were going to lose your gorgeous hair to chemo. The only form of rebellion against it was to join you in baldness. How better to show you that we all needed you to fight? That you were worthy of the love and respect that you ended up showered with by family, friends, coworkers, peers and fans.

So, surprise, P.G., we decided to shave our heads whenever you were ready to shave yours. We decided it even before you had your first chemo treatment and were due another one on Friday, our arrival date. And, as only he can, Chooch even thought up a way that was pretty cool to do it.

It was going to be easy, really, since we already had the plan for me to be your goofy, pig-tailed chemo buddy, so Kim could still work and none of us would worry over you by yourself at home. We’d simply planned for me to be disabled in Charlotte instead of Ashburn. At the very least, I would be with you and would know when your hair started to fall out and when we’d offer our solidarity.

As an aside, I delighted in the chance to be truly useful for the first time in five years. My inability to work meant I could give you companionship. You were still so strong that we just knew you wouldn’t need physical help, so it was fine that I couldn’t provide it. I’d just someone in the house, in case you suddenly didn’t feel well.

And while we thought it too soon for you to want to shave your gorgeous hair, we wanted to be ready for whenever it you chose to shave it. By us doing it too, we hoped to take the sadness and empower you with it. Clippers and a wig awaited us in my suitcase during those days as we altered our drive from Charlotte to Durham, to meet you where you were getting a second opinion.

I can’t even remember if it was Chooch or I who first brought up shaving our heads with you. But, as was so true with all four of us, the question was answered before it was asked. To hell with vanity, we needed you to know how much we wanted you to fight and that we were committed to your fight, too. Roomies for Life, and all that. And since you’d always complimented our hair and the length, and with yours getting long enough that you were becoming pleased with it, it was the obvious rallying point for us in the days approaching what ended up being our last drive to visit you and Kim.

We quickly decided not to bring it up, because, who the hell cared after the second opinion? Shaving it then would have just taken us time away from you and possibly upset you. And there were so many more important things to say and do for you and your family and friends.

I kept my hair in pigtails 5 or so days instead, at your side with wonderful people that love you so much. Thanks again for letting us be there with you and them. Peace would be much more difficult to find without knowing just how overwhelmingly smothered in love you were during your last days.

We decided to wait to shave our heads until after your memorial service, 2 months later. It just seemed not to have been cool to do. And those months packed a punch with serious grief processing over my Mom’s death years before, while two other of our family members were/had been battling cancer. Putting it off was fine, because it just meant our donations were growing longer.

The wig stayed in my suitcase through October. I liked having it close, back then. It was a tangible representation of what we would have done for you, all the while praying our plans might turn sadness into laughter.

The wig was a cartoon-y blue, because it’s Chooch’s favorite color and I thought it was yours, too. But I’d only need it if you let us shave it. You’d have had veto power, natch. I worried my bald and ginormous pumpkin head might be upsetting, so I quickly ordered it.

But now, winter hits hard enough to make my hands and other joints more and more miserable. Caring for my long thick hair became more and more problematic. Chooch and I were sure we still wanted cut our hair, but as a donation instead.

We started debating bald vs. short styles and ones that would give the most length to the charity we chose. I feared that shaving bald would just make me sad, as a constant reminder of your loss. Chooch was on the fence and considering shaving down to bald to honor you as we initially planned. He understood that I couldn’t go there because I already fear my reflection because of the resemblance to my Mom and I didn’t want a bald headed reminder of her during her cancer battles every time I looked in the mirror.

And truthfully, we didn’t think a hair cut was a big deal, especially since I’d already been plotting a cut similar to J.R. Blackwell’s after Balticon last year to ease the burden of styling my hair, which you agreed was brilliant. And, as Nutty mentioned, the first few years of Chooch and I going to Balticon were years we had short hair.

In our growing excitement, we shared our plans with various friends and family. They were not very well received and nearly every person seemed to advise against it. We decided to wait a little longer so that folks that love you or love us would know it wasn’t spontaneous or a crazed expression of grief. It’s just a hair donation and it’s done a lot. In fact, there was literally one being done by another stylist in the salon at the same time we were doing ours.

We’ve been looking forward to doing it for 6 or 7 months now, considered tons of hairstyles and off we went to our one and only stylist, Bree, at Rain in Ashburn, VA. It was nothing to donate my hair to the charity in your name, P.G., other than an honor.

You made the length of my hair so immediately meaningless, compared to all that you faced as well as how your loss cut so many so deeply. The shearing brought us much joy, and I think, to Bree as well, as we’ve been discussing a shorter cut for years. She really enjoyed that we insisted that only she could do the transformation for us, especially since she’d been hearing our tales before and after returning from our shenanigans.

So, as another winter storm bore down on us and with our grandson approximately 42 days away from arriving, we drove around three hours to keep our scheduled appointment. You know us and our love of road trips. And I decided that if our friends know us, they’ll trust us. The crazy lady time passed awhile ago. I am fine. Chooch is fine. We are fine.

Thank you for inspiring me to cut the hair that hurts too much to maintain, in spite of how many compliments I got or the threats I’d get when I’d talk about cutting it off. Jokingly, of course, but there was some pressure, too.

Lookit, our grandson, Codename: Little Bear, arrives soon and I’d rather snuggle with him instead of wrangling all that hair. Besides, it’s only a haircut, which is only one drop in an ocean of tiny kindnesses we all grant in this world. And I vowed to pay it forward every chance I’m able.

I will miss you, always. Know that this one remains grateful for the friendship that healed so many broken things in me.

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

Pix to prove it happened. More to come when there’s time for styling, we were literally racing a snowstorm and this was a recovery day.

 

New Nest!

Author: Vivid Muse  //  Category: Family, Household, Soulful

 

Chooch and I have a wonderful opportunity and we will be moving at the end of this month to a new home we are making with Eldest/Naughty Bear/M and his wife, our daughter(-in-law), who is too cool to be believable. Seriously, she can even herd Eldest, it’s glorious!

I can’t express how excited I am to be able to see them so often and to be there when Little Bear comes home from the hospital, safe in their arms at the end of March.

We have not yet picked out the next place, but because hubby’s duty station was changed (again!) from Reston to DC, we are looking at MD for a shorter commute for Chooch.

And we’ll finally be able to live in a place that, going in the door, we can ensure accommodates my physical debilities / Health Blahs. It sucks not being able to see daylight (one window in our comfy basement) or go to the kitchen or ask others to let Kaylee out for potty breaks. We are being super picky about those little comforts in the hopes of streamlining things for everyone, after all.

I’m saddened to leave Ashburn after calling this home for three years and surviving oh, so much, while we battened down the hatches against sadness, illness and death and helped each other heal many owies. We happily shared our lives, laughter, experiences, company, and our children, with our former and remaining Housies. My ears will always ring with the remembered trusting giggles and madcap adventures.

I can’t imagine not seeing Jen’s Wee Flowers as often as we do, and to miss out on all the fun as we have watch them grow since summer of 2010. But I also know that our bonds and love will survive. We’ve been through too much and won’t allow our friendships to die now. I can’t wait until we gather again to continue our baking traditions after the move.

I’ll also miss her father, grumpy as he is, for I love him, too. He’s one of the few people that you always know EXACTLY where you stand with him and he doesn’t lie or bullshit. I love that in people. Honesty is the information I seek, not sugar-coated air. Oh, and for always letting our dog live after eating his stuff. Sandwiches, pizza slices, cheese, crackers and dentures. #DamnDog

And it’s a big deal for me that I’ll be living out of Virginia (barely) for the first time since 1987, when I moved here from Central Texas. The few family members that remain live near enough to visit, although we are still much farther from Chooch’s son than we’d hoped to be, with this move. We were shooting for the stars, but the employment situation where our youngest sweet son is makes it impossible, but only for now.

But straight ahead?

New roads, new home, new hearts under our roof, new chapter.

Bring it on.

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

Health Update in Three Parts: Two

Author: Vivid Muse  //  Category: Family, Friends, Health, Whining

Picking up where I left off in a previous post:

Of course, this was life-changing for me, because I was experiencing things and learning a lot that went unnoticed before, much of it damaging for my health or of loved ones. I’ve been able to really explore those, without the luxury of therapy because of financial reasons, but I’ve had successes and am again finding “my voice” again, after embarrassment and shame at my situation was the microphone I communicated through for so many years.

I’ve made great strides towards my emotional growth in overcoming the depression that has been worsened since my debilities and other health issues that prevent me from being able to provide income to help my family during an extremely expensive time. (College, high school senior, high school freshman, plus too many other things. You get me.) Much of this I credit to Chooch, who supports me unconditionally, and then makes sure I catch my bullshit when I’m blinded to it.

All this even after I learned about “Counting Spoons,” but have only recently been able to put them into practice and stand by the boundaries I’ve set with others and with myself. If it’s negative for me or those I love, I try to understand it and heal it. If I am unable, I move on, because I recognize as a human, I cannot fix everything for everyone, regardless of my overwhelming need to.

I evaluate, I learn, I adjust expectations (to a point, and in scale with the same considerations granted to me on an individual basis), verbalize my line in the sand long before it can get crossed and therefore, is not my fault when people trash it and my trust in them is lost. People have themselves to watch out for, after all, and to assume we have mutual goals and want to get there the exact same with others is the definition of insanity, I’m beginning to believe.

Although much of this is new to me, it isn’t new to this blog. I actually posted about it over a year ago, and what I called “hope fatigue.” I didn’t even remember writing or posting it until I searched for the Spoon Theory link, but I’m happy to say that I’ve continued following the beliefs listed there. But again, I don’t remember writing or posting it. Fascination doesn’t begin to cover it, but if nothing else, I think that it also helps to demonstrate my neurological state then and now.

I’m shocked as I read it at the number of errors in the post (left uncorrected, because this blog is my memory bank and this matters to me), but primarily because I’ve wasted so much time learning and re-learning (and re-learning, based on some of the 40+ posts sitting in the Drafts folder) the same lessons, over and over and over and over with the same issues and people.

So BAM! While I’m smack in the middle of facing and accepting my handicaps/disabilities/Health Blahs, I’m hit again with more knowledge on how dumb my dumb brain truly has been and how excellently (HA!) it performs when being that dumb.  I am constantly reacting and off balance, not knowing if and when I could live this life by my standards again, rather than compromising with every person that crossed my path, whether I was being obviously taken advantage of or not.

I also chose to embrace my health FAIL and to test those limits, then define them, then accept them and adjust my expectations of myself, with the same kindness I grant others, regardless of how they treat me or my loved ones. We are human, after all, and each of us are flawed, and it’s really pretty simple, in practice.

The testing process was immensely humiliating, in front of friends and family. I kept over-extending myself while testing limitations and failing, then picking up the pieces, examining them again, discarding what didn’t work and keeping what did, and tried again. But all of it was with the feeling that I was on the outside looking in, rather than a person even involved in the interactions. Everything was muffled through the meds and Fibro Fog.

So, with Nucynta, I’m happy to report that I’ve (we’ve) benefited already from that effort, just since the first of this year. Yay! But I also truly discovered how lost I was in the medication, far far more than I ever thought. *hiss*

Sadly, my body simply can’t tolerate the Nucynta, or at least it in combination with other medications. After my visit a few weeks ago with my Rheumatologist, I’m now off of it with the next script. The negative health effects were too drastic and the fatigue and weakness had worsened. It did provide a measure of pain relief, but not enough for what my body went through trying to shake myself into movement. It felt literally toxic and I had constant nausea and an inability to eat more than a few bites of anything, therefore my blood sugar was in turmoil. Unacceptable with summer and my son and nephew visiting and the other awesome things we have planned!

More in the final post, Act 3.

Health Update in Three Parts: One

Author: Vivid Muse  //  Category: Family, Fibromyalgia, Health, Mental, Whining

Playing catch-up here, while my brain is clear from both migraine and fog.

After the first of the year, my doctors switched up my medications again, still seeking the perfect “cocktail” for resuming some semblance of normalcy and income generation. The order may be wonky, because my memory in that period is foggy.

  • I was given a prescription topical lotion from “Innovo” to use on “hot”/pain spots. It works, but has problems that greatly limit its usefulness, and was actually a bit scary a few times;
  • I was given a pain patch (Butrans) that made me tremendously ill and weak and was taken off of it after one month, so gnarly were the side effects;
  • I was taken off Vicodin and prescribed Percocet, because I was getting migraines with nearly every dose of Vicodin I took, with nothing else to fight the pain with, because…
  • My neurologist ruled out Tylenol, Advil and Aleve several years ago, along with a daily med that my GP and Rheumatologist have asked about several times, and his answer has always been that it’s unsafe in combination with (mild) cardiac issues and other Health Blahs. But…
  • When I asked him to explain again the limitation so I could explain it to my Rheumatologist earlier this year, he reversed his decision on all four drugs after we discussed everything I’d tried and reviewed my chart again;
  • He also told me that he couldn’t prescribe anything to help me with my migraines until my Rheumatologist and I “work out the Fibro pain issue without drugs that trigger migraines.” To our faces. With a straight face. After 4 years of him being my neurologist. Shocked doesn’t even begin to cover it.
  • He then took away my safety blanket prescription for Soma and I’m pretty sure I cried on the drive home, but again, brain fog. (Yes, it’s actually called Soma, Brave New World readers. And yes, it makes you go to sleep just as peacefully and stupor inducing.)

I called it my safety blanket because I knew that no matter how bad any of my pain got, Soma would let me sleep through it, which was an immense improvement to my quality of life and sanity. I always used it judiciously, since it worked and I needed to not build up a tolerance to it. I could lose the pain, at the cost of time with friends and productivity (HA!), but I decided when. I had control, in the worst cases, with this.

It felt like a long-time friend broke up with me, his claims were ridiculous to my ears. I wanted to scream and cry and throat punch, all at the same time, because every single prescription I’ve been given since “shit got real” 4 years and 8 months ago by him, has had migraine warnings, along with the other symptoms they were supposed to be fighting: dizziness, fatigue, nausea, vomiting, drowsiness and a predisposition for fainting and pretty much every combination of digestive trauma you can imagine. ‘Nuff said.

After the Butrans pain patch FAIL, I was prescribed Nucynta around March. The good news? After the Lyrica wean-down had it out of my system, I discovered how much of a fog Lyrica kept me in, on top of the other medications that I take, either daily or for other pain. All but the high cholesterol meds (more genetic FAIL, for me but hopefully not my sons.) have been tweaked or removed, so I think it really was the Lyrica that carried the brunt of it.

I had a brief wean down from it, then started a new daily, Nucynta, and while it did little for pain, it had less of a “dumbing down” then the Lyrica had. I was able to comprehend things better. In many, it was like I finally learned English again and was able to do a lot with being able to understand and reflect on the differences. You know the distorted “funhouse mirrors?”  That’s what sentences and conversations were like, of those that I can clearly recall. I learned from attempts at “tricks” to make myself productive and began new patterns based on my new understanding of my disabilities.

More on this in the next part. Migraine calling.