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.

 

 

3 Year Old Girl Dancing to Sia’s Song, “Chandelier”

Author: Vivid Muse  //  Category: Health, Music, No Whining, Soulful

I think it’s safe to say I’m at least mildly obsessed with this song and have a sisterly crush on the artist herself, at this point. I’ve already posted once about this song, have another half written in my head, but since I just came across this YouTube vid, tweeted from @Sia’s verified twitter account, I had to stop and share immediately. It now has me wanting to play Sia’s video for our Wee Flowers (housemate Jen’s daughters, nearly ages 7 and 5), since they love to dance so much.

It would be bittersweet, because of their skill and epic cuteness and the downer reason that is the reason  I relate to the lyrics so much. Coming from the aspect of being broken physically to the point that physical or even emotional stress can trigger the worst of my Health Blahs’ symptoms, as I explained previously, the efforts I have to take to go out and about in public can be pretty Herculean. That means, when I am able to get out and am having fun, I typically resort to any means necessary to stay in motion and keep on making memories.

And, no, it’s not about the alcohol, other than as a metaphor (and because I used to be able to drink socially before recent medications) for the assumption people make about me and how I always have to be altered by medication to get out of isolation and to where people are. It’s not like or want, it’s need and must. I am no alcoholic, never have been. I used to drink socially, and now if I have more than one or two drinks, I risk immediate migraines and life-threatening liver damage, because of the work my liver has to already do for all the meds. Not looking to die quite yet.

Enjoy the cuteness! I completely adore the singer, more on why I relate so much later, but it totally plays to my desire to live vicariously through those that can do the things I wish I could do.

To view the original music video, you can view it here. It’s what the 3 yo is dancing to.

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?

Health Blahs Update (in great detail)

Author: Vivid Muse  //  Category: Dizzy, Health, Mental, Rules of Etiquette

It’s taking me a very long to write this update, which started two weeks ago, I have initiated my one hour publish rule. Apologies for messiness, but I have to be consistent with … me.

A follow-up with my Rheumatologist resulted in her halting the one month try of a weekly pain patch, Butrans. The increase in my already frequently present symptoms were misery-inducing, after it’d been on four or five days. I joked, with a nervous laugh, “Here we go!” as I pulled off the used one and put on a fresh one. By the time I put on the fourth, I wanted to cry as I put it on.

It was misery in a 1 x 1″ -ish square. The constant high pain migraine, constant nausea, sporadic and spectacular vomiting (no there are NO pix. *shiver*), dizziness (yes, I’m already dizzy a large portion of my day. this was “stay low to the ground” dizziness.), fatigue (I call it my lead blanket) and generally feeling constantly wasted. I burned myself more, cut myself more, have more bruises and fewer eyebrows left because of my slow reaction time (long story. derp!) I quit driving completely, which has put an even greater burden on my husband. (saving throw by Housie Jen, who let me accompany her on a double shopping trip!).  I’m hoping that the next prescriptions lets that resume.

Now, these side effects are things I already was diagnosed with on the “Vestibular Migraines” list of symptoms almost four years ago. I think that’s what made it utterly debilitating. I would occasionally only get 4, maybe 5 hours a day where I was fully cognizant and able to interact my beyond our home, but I required at least one or two days for recovery.

The patch resulted in my being in a constant state of clumsy, bruised, confused, whiny, cranky and sometimes, downright evil. Eldest kindly me Snippy on a stressful day recently. (He was totally right, I really was. My mood was justified, especially with the amount of pain in play that day, but still I had to try and turn my mood around for him, Chooch and our niece. Definitely not their fault!) This was aggravated by my minimizing other medications that could have added to the relief for fear of becoming addicted or of overdosing because these are not the meds you want to mess up and take too often.

When we told her about the vomiting, my fave story being a vibrant purple splash of color (vanilla nutritional shake with blueberries blended in was SUPER purple!) that I left on the shoulder of I-95 south a week before, she laughed along with us, but remained concerned.  I assumed she’d want me to tough it out longer to see if I acclimate to it. And while the mild base of constant pain relief was nice, Dr. says it’s not good enough to offset the symptoms on the lowest possible dosage. But pain relief is pain relief, so I briefly argued that maybe my body needed more time to adapt. In the end, I gotta say, I loved ripping that damned thing off. Didn’t even make it to the car! *ow*

I’ve taken a break off the Butrans before starting the next daily. I needed a damned break from that stuff, the pain increase has been powerful. I’m starting the new daily tomorrow. Bracing for side effects, but as ever, I’m hopeful for relief that I can do long-term. I’ve also gotten a specially mixed lotion (PBJ for good insurance, $900 for 3 month supply of lotion, zero after insurance!) and a regimen change for a regular pain-breaker.

The self-imposed driving ban is going to be extended for at least a week or two after the start of it. I hope to regain being able to drive again. I miss driving and LOATHE inconveniencing Chooch, who already works extremely hard with a 3+ hour near-daily commute. He wants to stay home more than I want to go out, most times, but we have mastered compromise on such things.

So, the process of finding meds that can bring normalcy to my life continues, after my 4th anniversary last fall. And both my Neurologist (neuro issue wrangler) and Rheumatologist (Fibromyalgia wrangler) indicated that there will not likely be anything that fixes me. As in, no cure likely, ever. Frustration? Infinite and immeasurable. Time and money lost (health costs + lost income)? Infinite and immeasurable when compounded by things we’ve NOT been able to do for our sons and loved ones. Gratitude for my problems not being terminal and only being pain? Also, infinite and immeasurable.

It’s at this point that I wonder if I can ever effectively thank the people that have intentionally, unintentionally or specifically shown kindnesses to me since this started. It’s pretty depressing to go back to Square One with every med and track the results. There’s no progress on my health improvement, but I just have too many amazing people that I want to share experiences with. Or watch them strive and obtain their goals or grow their families (preferably both).  Or sit in a corner booth with someone and giggle over nothing worth mentioning and/or solve the world’s problems. And, guys, we’ve just hit the tip of the iceberg, there are so many games we have yet to play!

Whether I’ve known you 25 years (we gotta celebrate, Cindy!), 10 years ago, 6 years (Con Fam, you’ve never failed me!) or 2 weeks since we met.  Just, ya know, thanks. Good people make the bad days bearable and the good days drip with gold and sparkle like diamonds.

Namaste.

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.

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.”

The State of The Muse Address

Author: Vivid Muse  //  Category: Family, Hauntings, Health, No Whining, Too Long For Twitter

Chooch and I have been at a marathon pace of giggles (and pain) the last few months, with a nice 2 week bout of illness in there. We are trying to regain balance in our lives after, essentially a three week uprooting of our schedules.

There will be many posts about Hawaii, if I haven’t said so already. I have many thoughts and house rules now, because of my love of the natural beauty they protect so well on the island of Kaua’i, if not all the islands of Hawai’i.

Our middle son T, now 17 years old, looking out over the beauty of Hawai'i as we drove through Waimea Canyon.

Our middle son T, now 17 years old, looking out over the beauty of Hawai’i as we drove through Waimea Canyon.

Until I can manage the mischief, I am doing a lot of picture posting (visuals are my best communication tool at the moment) at my Flickr site, and because I haven’t bothered my most wonderful husband to help me get this blog, Flickr, Twitter and Facebook to update. And prolly G+ since I am resigned to our future Skynet overlords.

My handle at Flickr and most other sites is Vivid Muse (with or without spaces). I do filter pix of our kids and of the minor children of friends. You have to ask for me to not let a solo photo of your child be public, it truly is a big exception. If anyone finds that I’ve slipped, please message me and I’ll correct asap.

In case you haven’t seen elsewhere, I stopped all assistance to Ditched by Kate in April of last year. I finally admitted that I simply was not physically or mentally able to be representative of their image, so I resigned. Chooch also left the band, months later, for unrelated reasons. Our friendships with the band remain, which was a goal from the very beginning. I’m very grateful that’s happened. I will never forget my part of DBKhaos and wish them all the best, sincerely.

I have so many things to express, but am needing to organize them. The biggest thing I have to say is about the Charity Cancer Anthology, (title TBD) and my inability to publish it.

I have been battling ever-worsening invisible (mostly) chronic pain for four years now. There are different aspects and associated issues, but basically, my body is hindered by pain, and my mind is hindered by fog and long periods of inability to focus, remember and/or communicate coherently. I am not the person to do this job the way it deserves to be done. However, it must happen. For my Mother’s piece and the other pieces that will be included have amazing messages to share. And because cancer will not stop, neither can those that fight it.

Because my Health Blahs, as I call them, are chronic and not alleviating, I must assume that I must find someone willing to take this on. Chooch is unable to do it for work schedule and personal reasons of his own. Cancer is a common word in our lives, suffice it to say. Too soon, doesn’t begin to cover it.

I will be reaching out and seeking advice on getting someone else to re-promote, take additional submissions, edit, publish and market the book along with Chooch. I have stipulations, because of the excruciating personal nature of this publication, but he will be the one in charge of those.

Please contact Chooch or I at Viv@VividMuseCreations.com if you have suggestions, criticisms, or services you’d like to donate, since this is a non-profit charity book, and also if you have services that you think will help us spread the word far and wide to raise the greatest funds possible to wish this evil disease into the cornfield.

My deepest and most sincere apologies to those that in some case have been waiting years for this anthology to be published. It is in your honor that I show my gratitude with this public apology and embarrassing level of detail of by failings. Please direct any response to Viv@VividMuseCreations.com with ideas, criticisms, requests to add more selections, alter/add to your current submission or any other matter.

Please know that I’ve let myself down more than I’ve let anyone else down. In moving out of cocoon-mode, things have to be completed this year. Nothing that lingers because of fear/embarrassment/pain will see the dawn of 2015. This is my goal. (Warning: As part of my typical foolishness, I will be channeling Mabel Pines from *cough*Disney’s*cough* animated series, “Gravity Falls,” by embracing awkward and embarrassing things and putting them in my rearview mirror. I’m human. I make mistakes. I’m moving on. Feel free to join me.)

As a result, I have something similar to Write or Die in mind for this blog. I have to schedule the post when I begin writing it. I have 1 to 4 hours to hone it, since I get lost in Fibromyalgia Fog frequently or migraines take me down. If necessary, that means posting before proofing. (I can’t wait to see if I screw that one up. Future half sentences ahead!)

And I’m tired of looking at super short thoughts that I’ve captured that I feel like I have to expand on into a more coherent post. I am rarely coherent. If you know me in real life, you know this already. So, my misfires are a part of my “voice” or POV. (We’ll see how long this lasts. I’m coming off a great weekend.)

I think this will help with the 70 or so pieces of thought and 4 journals full of thoughts. Lose all my baggage and keep our beloveds and keep our human and material treasures close.

Oh and we my do a new Into the Blender Podcast, soon-ish. We did a google hangout on Nov 1, 2013, our 10th and 11th anniversaries, but the audio isn’t up yet. We will hopefully be able to do an occasional episode the same as PG Holyfield and Chooch produce our SpecFicMedia.com shows. Record a live show in Google+, while broadcasting live to YouTube channel and then strip out the audio and post in our podcast feed.

And because of another kind nudge, this time from Dave Slusher, I’ll attempt to talk into a microphone soon for my stale, sporadic at best Girl’s Rules Podcast. I have little control over whether or not I’m physically able, but I will try.

Maybe something will come of it that others can relate to and also help with my successful-to-date fight against isolation.

Happy New Year, kittens.
*rooster crow*

Healthy Twist on Mom’s Turkey Noodle Soup

Author: Vivid Muse  //  Category: Cooking, Health

Chicken noodle soup

My Chicken Noodle Soup, aka, Mom’s modified turkey noodle soup. There is nothing earth-shattering or extraordinary done here, just happy that the adults were actually feeling much better after having it, along with a combination with such things as antibiotics, rest and hydration. We still credit my Mom’s now-bastardized turkey noodle soup (traditionally, only after Thanksgiving meal), with some alterations she’d slap me over – for never wanting while she was here to enjoy it.

A precious few of us still make my Mom’s soup during an illness, rainy weather, or just ‘cuz we miss her (Cancer took her almost 8 years ago. A few are still raw.). Halloween was one of those days. The family we lives with was besieged with strep throat, which was lingering and misery-making. And I’m so rarely hungry (prescription medication) that I have trouble getting nutrients in, so I am having to get creative on jamming nutrition in small amounts without having tons of prepackaged food bars and shakes. I want natural vitamins and minerals from my diet, but that’s hard to do most days. I knew we adults were headed for biological doom while taking care of the sick little ones, so adrenaline and Depeche Mode pushed me through. It turned out tasty with my off-the cuff, empty-the-fridge modifications.

Mom’s Turkey Noodle soup ingredients:
-in her defense, she was attempting making one soup that everyone would enjoy. Even the addition of the sour cream was a hidden step until she thought her grandkids could handle it being in their food. 

  • broth (specifically made by cooking down a stock from the remainder of the Thanksgiving turkey carcass (Eww.), boiling for hours and filling the house with yummy smells);
  • egg noodles;
  • cooked turkey (or chicken) chopped into pieces small enough that they can share spoon space with an egg noodle (but not tiny);
  • 1/2 cup of sour cream (or more, if you prefer);
  • salt and pepper.

My altered version, which was surprisingly tasty:

  • cooked turkey (or chicken) white meat only – roughly chopped into pieces small enough that they can share spoon space with an egg noodle (but not tiny);
  • purchased organic veggie stock (my preference), which I ran short of so added water to get the amount I wanted for the full bag of noodles and addition of other stuff (I don’t do carcass boils. Eww.);
  • bag of egg noodle of choice;

  • 1Tblsp each of olive oil and butter (or earth’s balance type substitute);
  • 1 cup of purchased mirepoix (diced and ready to use in the produce section);
  • 1 tsp. thyme;
  • 2 carrots, cut to slightly smaller than chopped chicken;
  • 2 handfuls of re-washed organic spinach, cut into chiffonade;
  • a cup or two of cooked quinoa;
  • Optional: 1/2 cup OR 1/4 cup Greek 0% yogurt (start there and increase up);
  • salt and pepper to taste.

I made this hurriedly on Thursday, because with strep in the house, it was all hands on deck and I didn’t know if/when it would hit me. If I’d had more time, I would not have used the rotisserie chicken as the flavor (garlic, from Harris Teeter) was too bold a flavor for this version. I will next time either use the cooked and de-boned rotisserie chicken breast meat (as found at Costco SO cheap) or poach boneless/skinless/fat removed chicken breast in the veggie stock and possibly added chicken stock bouillon chunk or two.

I also decided to try enhancing it with take-aways from weeks of watching cooking shows. I boiled veggie stock down a bit, and then added the cooled meat from a rotisserie garlic chicken (was an awful choice, for my palate, compared to simply poached boneless, skinless chicken breasts) and whole wheat egg noodles.

Next time, I will cook the broth down more, but also increase the amount at the start if we have cooties. I forgot to calculate the illness-to-broth-requirement. If you have the time, do this step, I am positive it will improve the flavor without smashing your taste buds as this chicken did.

  • Pour 3 boxes of broth into a stockpot. Bring to a slow boil. Add egg noodles and pre-cooked chicken and cook to package instructions.

That was the version I took portions out for the girls to try. They weren’t thrilled, but in fairness the whole grain egg noodles are a bit cardboard-y. I’ll try them again with better chicken and regular egg noodles;

  • If making a separate batch for more mature palates, go ahead and prepare mirepoix (see below) while the broth is boiling and the egg noodles are cooking.

For the grown-ups’ batch:

Mirepoix – celery, onion and carrots diced into uniform shape. They are key for the base of most soups, as it gives an aromatic base to all you care to mix in to it.

Pro tip: Having Fibromyalgia, dicing is a costly step for me, physically. If you suffer from Carpal Tunnel or anything that makes this step problematic, I can usually find the celery/onion/carrot (non-organic) mixture already chopped and ready to drop in the pan in your local grocery store. It’s also known as ‘mirepoix’. (various spellings, as it’s a French phrase for the combo of diced carrots, onion and celery)

That said, the vegetables are insanely cheap to buy, so I would recommend doing this step yourself if you can make the time, can do the cutting (or have a helpful bestie), don’t mind doing the onions and/or don’t have the option for Organic pre-chopped to make it worth the while.

  • Melt butter and heat olive oil until heated through;
  • Add 1/3 cup of each, diced: carrot, onion and celery;
  • Add a dash of salt and quick grind of pepper;
  • After onions have started to turn translucent, add thyme. (I added it at the end because it was dry in super tiny flakes that I didn’t want to burn in the hot oil while the mirepoix got nice and softened up.);
  •  Saute until completely softened;
  • Allow to cool off the heat while the noodles cook.

With the kid-friendlier portions of soup (stock, noodles, chicken) removed from the stockpot, I stirred in the still warm mirepoix and let it bubble for a bit, along with two handfuls of baby spinach chiffonade and pre-cooked quinoa (just to use it up) enough to warm it all up to a nice bubbling. Adjust seasoning with the salt and pepper and it was delish and filling.

Last touch:
Mom’s original turkey noodle soup recipe ended with sour cream stirred into the soup and dissolved into it, shortly before serving. It gave it a super rich and filling touch. If it was the giant pot, as it was in later years because we all hung around for the late dinner of soup, she used a full pint. I always stirred in about half that (too much fat), and it still rocks.

Healthier sub: Housemate Jen told me that Greek yogurt is reportedly a great flavor substitute for sour cream. A taste comparison proved that it tasted like sour cream, with flavor that is much stronger. I’d start with a quarter cup and add more to taste. (The health boost of Greek yogurt in lieu of sour cream is significant.)

NOTE: I had to add more salt for my palate, but otherwise it was almost exactly like the sour cream version. Still, a little goes a long way.

Vegetarians:
Swap out your protein substitute of choice.

Vegans:
Omit the butter and either replace with Earth’s Balance or increase the olive oil; leave out the sour cream/Greek yogurt unless you have a replacement you like.

*Add it to a small portion in a separate bowl and see how it breaks down in the boiling hot soup. I’ve seen things, scary things, when you expect a similar reaction for dairy replacements. You don’t want to do all this work and then have it be inedible.