Author: Vivid Muse

Categories
Friends Movies Too Long For Twitter

Spoilers, Sweetie – Guardians of the Galaxy and My Communication FAIL

I dunno if anyone else does this, but do you identify with anyone in Guardians of the Galaxy?

I see Naughty Bear as the Star Lord, partly because of facial similarity. (Yes, Star Lord is THAT handsome.)

That kind of thing. Do you do that? If so, who do you most identify with?

For brief reference, I tend to see movie team-ups broken down into the necessary gaming group requirements. Using City of Heroes MMORPG (RIP) as my examples:
a tank, a blaster, a controller, a healer, and a scrapper. (I may be missing a few and don’t know the City of Villains versions, but do you get what I mean?)

For myself, I am Groot. Because of his creaky body that could sometimes do cool stuff under extreme duress (and pay for it later, lol) , his limited speech (mine is self-limited due to neuro stuff) , his need to do other things that would cause him harm if it would save or help another to survive (oi, the bruises I came home with, lol.), my need to make circles around ones that I love and include sparklies was almost too much to bear at the theater, upon my second viewing. And so on, with my empath need to identify with an empathic character.

Also, after much self-examination, and what the last three weeks in August was, I find I was dropping my filter for brevity in urgent moments and then almost disappearing as I “translated” (as Pamela then called it).

I am having difficulty filtering now. It started over the summer. And in August it was ripped off my face. There was no choice. I have less tolerance for bullshit, and I don’t mean that in a judgmental way. I mean it in a physical condition impacting way.

Emotional stress triggers physical stress in my f***** up body.

When you add the lowered filtering, which LITERALLY only appears to be working on a fairly good level when I’m around kids, to the many many many many communication difficulties I was having at times, which many people can attest to (sadly), what I was putting in the public stream sounds to be gibberish and scared some friends, I may as well have been simply saying “I Am Groot.”

For that I am both sorry and humbly grateful for your concern.

#FuckCancer #BecausePGH

Categories
Too Long For Twitter

Cancer, Confusion and Hope?

Lego version of our own P.G. for his fight against cancer, with Arya Stark fighting by his side. by Christiana Ellis

I’ve not really done a full blog post for my friend, P.G. Holyfield, who we left this world far too early at age 46. It was cancer that hid in his body so long, we only had weeks when we thought we had years of the fight to support him through.  His second and final opinion was on a Friday, and he left us on the very next Wednesday. Although I am spending a lot of time talking about it, it still doesn’t feel real and likely won’t until we walk in the hotel for Balticon next year. I’m “planning” on going, but my health is such that it could be a disaster for me to attend. I don’t want to make it harder for anyone else.

Balticon Beats: The New Media Dance Party

In another place or time, possibly as a book I am writing as a result of seeing what real bravery is in a young-ish man, I will discuss how my dear friend has changed my life and my outlook on it, finding hope, love and compassion encircling someone that has been diagnosed. It’s a horrible way to go and I’ve seen it twice now (Mom and P.G.) and I no longer fear it. It steals our dignity, not who we are. It’s a big killer, I’m not down playing that. But I won’t give it my life AND my living, too. Fuck cancer. I have stuff to do until it may be my own turn.

When P.G. started talking in scary terms, I finally got off of my ass and went back to my ob/gyn for the genetic breast cancer marker test. Again. Last year my insurance wouldn’t cover any of it, so the entire $4k would be coming from our wallets. Being disabled, denied benefits again while unable to work, means that we have financial difficulty and will for some time. So, as the insurance company decided, they would test me for the marker if/when I am diagnosed with cancer. Brilliant, no? They’d have to run the fucking test anyways.

Sometime in February, I got a call from the lab itself, saying that Health Care Reform, aka Obamacare, now means that my insurance company HAS to pay, and with my fun maternal-side family history (Mom, Grandma + at least one of her sisters and my Great-Grandma all died of breast cancer), they may pay for the ENTIRE test.

When we got the scarier and more scarier sounding test results coming back, cancer fears kicked in. We were already talking about me staying with him at the house during post-chemo recovery. Been there, done that, and he was so strong after getting in to peak shape in the last year or two, we never doubted we’d be playing board games and watching movies and I could do my goofy cheerleader crap, too.

But we were all really scared, too. I turned my fear into action, and went back to my doctor to give another sample and to see what our copay on the BRCA genetic testing. I got a call last week, but … last week was still foggy time. I answered the call today and while I was expecting a financial discussion, I instead was told that …

… I do not carry any of the genetic markers for breast cancer (that they have identified and have tests for).

I don’t carry them.

So, I don’t know why all the women on my Mom’s side died of it. My Grandma and my Mom both had horrific recurrences years after their initial diagnoses.

Mom’s two sisters have not been diagnosed, but one went on a clinical trial in the mid-90s for a hopeful “prevention” of breast cancer medication. The other had a radical mastectomy after my Mom died (the surgery would have happened anyways, there were other health issues that are private).

So, I can’t say if it was something in the environment or some gene not discovered yet. And I’m just as confused about what to do as ever. But my next step is a risk analysis for getting it. I am three years younger than my Mom was at her first diagnosis, and it was advanced.

So, even though the person I thought I would be having chemotherapy with and laughing at our horrific symptoms instead of crying over them, well, he’s now gone.

I started this process because he made me brave enough to feel like I wan’t going to be facing it “alone,” even tho Chooch will be with me. It just would’ve been a support group with history and short-hand, and so I’m surprised to not have that as I’m moving forward.

And I am. I’m moving forward. I’m not alone, I’ve learned that in the last month. And I know cancer survivors, unfortunately.

And I doubt that I am facing cancer. I’ve been extremely vigilant. But I’m doing the risk analysis and seeing what lies before me anyways.

Somehow, I have so many people that are kind to me that I want to stick around longer.

And because I must finish on an “up” note, I’m also happy to announce that my oldest son, codename “M” or “Naughty Bear” is now married to a wonderful young woman.

I have an amazing family, with a new daughter(-in-law), codename: Galadriel (Gal for short).

And they are expecting their first child end of March. We don’t know the sex yet, but the baby has been nicknamed “Little Bear,” and according to my baby countdown app, is now the size of a lime. A LIME.

So, after the horrors of August, I look forward to the life that’s on its way, already growing and I can’t wait to meet him or her.

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Categories
Family Too Long For Twitter

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

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

Categories
Cool Links / Clicky Linky No Whining Too Long For Twitter TV

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

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.

 

Categories
Hauntings Kids Soulful Too Long For Twitter Whining

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

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.

Categories
Music

Gold Guns Girls by Metric

Lyrics from A-Z Lyrics

“Gold Guns Girls”

All the gold and the guns in the world
(couldn’t get you off)
All the gold and the guns and the girls
(couldn’t get you off)
All the boys, All the choices in the world

I remember when we were gambling to win
Everybody else said better luck next time
I don’t wanna bend, Let the bad girls bend
I just wanna be your friend
Is it ever gonna be enough

Is it ever gonna be enough
Is it ever gonna be enough
Is it ever gonna be enough

Is it ever gonna be enough
Is it ever gonna be enough
Is it ever gonna be enough

All the lace and the skin in the shop
(couldn’t get you off)
All the toys and the tools in the box
(couldn’t get you off)
All the noise, all the voices never stop

I remember when we were gambling to win
Everybody else said better luck next time
I don’t wanna bend, Let the bad girls bend
I just wanna be your friend
Why you givin’ me a hard time
I remember when we were gambling to win
Everybody else said HA HA HA HA HA HA HA

Is it ever gonna be enough
Is it ever gonna be enough
Is it ever gonna be enough

Is it ever gonna be enough
Is it ever gonna be enough
Is it ever gonna be enough

More and more, more and more, more and more,
More and more and more and more, more and more,

  For those moments when you realize all the sacrifices of time/effort/self-growth are just a drop in an ocean of need, and are appreciated as such. Your catharsis may vary.

Categories
Too Long For Twitter

Health Update in Three Parts: Three

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.

 

Categories
Cooking ExperiMENTAL

Booze Bears Instructions

I don’t remember where I first tried these, but I started making them myself a few years ago. We’ve been taking them to parties, since we rarely get to host anymore, and other events where friends are indulging.

Thanks to a reminder from two different peeps, I’m sharing you the info we’ve gathered after years of testing and experimenting and have it pretty streamlined.

You need a fridge and at least 24 hours start time. (And be careful of hotel room fridges, they tend to run extra cold which slows the process. Yes, I’ve made them that way many times.)
Experiments also proved that gummies work, but not the sour gummies. It was disgusting, even more so when dumped untested in the toilet because I didn’t want that sludge in the hotel sink or trash. Unholy!
  • Start 24+ hours before you want to serve them. A few hours earlier is fine, but I never go less than 24 hours. I’ve read that you can start as early as 48, but I’ve never tried it since the results are great with at least 24 hours. No fail!
  • You want a glass or plastic container and plastic or wooden stirrers. Use no metal or tin foil, because SCIENCE! (I’ve never researched, I’ve just trusted the advice from the web sites.)
  • Place a layer of bears on the bottom of the container, I suggest only two deep for better absorption, so decide on the size of the dish accordingly. I serve them in 9×9 pyrex square casserole dish, 9×13 for bigger parties, scaling based on crowd size and number of batches and their spectacle booze interest.
  • Pour in the booze of choice. You want them covered, but not too much. Just above the bears is what I do, and add more as needed when stirring. Usually another splash around hours 12 to 15 maybe?
  • Hard alcohol works, liqueurs have not (yet).
  • Stir to coat. Cover and refrigerate on a level shelf. 
  • You’ll keep them in the fridge, covered, and stir every six hours or so. 
  • Overnight is fine, it’s not fragile enough to set an alarm just to stir. You are just going to break them up and re-coat them with booze after they start to adhere to each other.
  • Uncover and serve with a slotted spoon or something, and make sure you have wipes or napkins because hands get messy. 
  • If you use gummy worms, bear in mind those suckers are worth several bears and may absorb more than they appear. (I recommend with Tequila, for obvious reasons.)
If anyone has pix from Balticon, contact me because I don’t think I have any from the mega batches we made with Nobilis’ infused vodkas and other flavors.
The pix we have will be posted later. Enjoy!
Categories
Family Friends Health Whining

Health Update in Three Parts: Two

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.

Categories
Family Fibromyalgia Health Mental Whining

Health Update in Three Parts: One

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.