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.

 

Smoothies for Chewy Health, Take 2

Author: Vivid Muse  //  Category: Cooking, Fibromyalgia

At this point, I’m disgusted with Western medicine. Not because of the limitations of what they can do, they have miraculous abilities, and is a marvel, in my mind.  My beef is that they will only consider the Next Pill. Which I have to take other pills to counter-act the side effects of.

Shenanigans.

After all this time, I know that, at least in my situation, everything hinges on my whole body health. Getting those to work together are key.

In fact, I have never in my life been more aware, as the emotional aspects of my recent experiences have caused a massive increase in physical pain and complications. And while studies look promising for future Fibromyalgia treatment, improvements for patients are years away, at best. Big Pharma’s gotta keep the revenue coming in, after all, and a cure impacts that.

After nearly 5 years, we’ve exhausted what we know is out there now, but wait to see what the Rheumatologist says. I’m just grateful my Health Blahs are pain and neuro stuff and not cancer. I’ll live and be grateful for whatever condition I’m in, until I’m not. Pain sucks, yes, but I must diminish it to myself. I will not focus on it and expound on it more than necessary as a journal, when I’m already so useless most of the time. I’m using all the strength I have to ignore and overcome the pain. Believe me or don’t, I choose not to wallow in what’s so broken in me right now.

Part of my expanding practices for relief, I’ve been considering “juicing” for a couple years now, and thanks to my sister, I have a smoothie book, from the Nutribullet company. I’m only using a basic blender for now, until I decide if I want something small and convenient (possibly the bullet) or one with multiple purposes (Ninja-type blender), a la Alton Brown’s belief in never owning any kitchen tool that only does ONE thing.

I’ve already decided against using an actual juicer, which beautifully strips out all the peels and cores and seeds, but it also pulls out good fiber, which annoys me to no end. They work great, the fruit juice tastes amazing, with no texture, just juice. But since I need meal replacement instead of simply vitamin boosting, I need fiber in there, too.

I’ve been studying healthy diets for a long time. I know that I need fiber to scrub toxins out of my system, but I’m way to thrifty to tolerate dumping out fiber and then buying more to consume. Plus, I need something VERY easy to clean and those big ol’ Breville’s just look to tricksy for me to use and clean with my painful hands and poor dexterity.

On a whim a several months ago, I went through my cupboards and fridge and put together a healthy shake that was tolerable. I drank it, but I haven’t made another until this week, other than “natural” plant-based protein shakes, which I’ve had to do for years to maintain nutritional intake. I knew I would try again, but went back to Amazon reviews and blog articles and occasional conversations with experienced folks.

I know so many incorporating them, I can’t even remember who all I talked to, besides our spectacular friend (and hair stylist) and friends Jett and Chad, who have been doing it for awhile now, too. Plus, I’d sampled half a dozen different smoothies by then and enjoyed them. These are definitely not the nasty smoothies a relative once made when visiting about 15 years ago.

For that one, I took my two polite drinks, and followed the lead of another, by nourishing the shrubs with them since we couldn’t tolerate (as adults and parents) the flavor or texture or the taste of evil on our tongues OR find anyone else willing to drink them. (We did all of that out of sight, no worries. Mama raised me right!) In hindsight, since it tasted like we were drinking liquefied branches and dirt, it was the perfect spot. Circle of life and what-not.

My physical needs require them now. Many days, I am unable to climb the stairs to the kitchen. We have a mini-fridge/freezer (Food-only for years, no room for beer!), a microwave and kettle in our basement apartment, which allows me to stockpile necessaries so I don’t run on zero calories before Chooch gets home from work with sustenance. But many days, the ability of cooking an affordable dinner for us, let alone breakfast and lunch for myself, is simply not possible and is sometimes dangerous (burns, cuts, spills, broken things).

And these fruit/veggie smoothies are even helping another Fibro issue I have when eating, which is a type of throat constriction. It rarely occurs when drinking or breathing, only when eating solid food. It’s extremely painful, and in my entire life has only happened a handful of times with liquids or shakes, as opposed a a handful of times a day, with solid foods.) The pre-made nutrition shakes helped as well, but are expensive and full of chemicals and Glob-knows-what. Since another health goal is to eat more natural and as few processed foods as possible and I can’t “go natural” with Ensure’s mystery chemicals, so I’m making my own liquid nutrition now.

So, now on Day 3 (in a row!) of incorporating at least one crazily healthy, Glob knows how it will taste, fruit and veggie smoothie. I’m hopeful that I can make this a daily habit in the near future. If I actually stick with it, in a few weeks, I’m going to increase it to 2 meal replacement smoothies a day, since that’s usually the minimum meals/snacks I skip. Each one I make is 2 servings, so for every time I make one, I have a spare for the next meal. I’ve had the second serving of the one I made yesterday already.

As for taste, because I’m being cautious in my selections for tastiness and longer commitment and it may be more limiting than I predict option-wise, all I can say  is yummmm… They do indeed taste better than they look.

The spinach makes it look like baby poo, but tastes like nothing and the color is the only detectable thing about it. The sweetness from the carrot and fruit easily mask it. Since I’m also adding protein powder, that helps, too, I’m sure. I have trouble tasting it over the fruit, I’m sure it’s doing some masking with the vanilla flavor, but it’s yummy so I’m not messing with it.

Ingredients:
2 handfuls of baby spinach, a fatty bo-batty carrot, a large banana, peeled and seedless mandarin orange and water (as much as needed to get the thickness I like). Also some vanilla protein powder and some almonds.

All fresh and gross-looking and weird textured and surprisingly tasty, even on Day 2, in truth.

Results on third day:
Nausea is more tolerable now, but the lack of appetite is still there. I still think that is most likely masked by the pain meds. But I’ll continue forcing myself back on to an eating schedule to avoid the pitfalls of things that taste good, rather than things that taste like ass (also a medication side effect), and the nausea aspect has me going this route.

Getting in so many fresh and raw fruits and vegetables every day, even though pulverized, has me at least thinking I feel better. There is certainly better nutrition since I’ve started, and it’s carried into other choices. I’m definitely keeping the fiber aspect and am just waiting until mid-November to buy a new machine, if I can’t ever find my blender. I’d love recommends on them if anyone has an opinion. I’m leaning towards the Ninja blender, as a friend just said she loves hers.

Two changes:

  • I gotta start with nuts in the blender first, cause it’s damned weird chewing bits from a smoothie.
  • I want to find a natural protein source that is unflavored.

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.

 

 

Couple of Thoughts This Halloween

Author: Vivid Muse  //  Category: Cool Links / Clicky Linky, Fibromyalgia, Games, Health, Too Long For Twitter

 

First thought:

I again surveyed my blog land, and I have about 60 draft pieces that I’m trying to edit to post. With my neurological and physical health issues, I struggle immensely to get the wording right before a migraine hits or dizziness/nausea forces me to leave the computer screen.

My goal will be to post at least one a week and CONSIDER YOURSELF WARNED:

  • I am lowering my self-editing in order to get the thoughts out before I lose them. This blog has turned into more of an online journal than originally intended;
  • I need to keep posting to the outside world to stop feeling so isolated from it. Personal in nature and likely emo at times;
  • There will likely be multiple and unrelated topics within one post. I ache for brevity;
  • If you’ve not had a comment approved here before, I have to Allow it to be visible on my page. I don’t gather lists or info to sell or use either nefariously or for the Greater Good. (Morally and also, “Rawr!”);
  • My site, my rules.

Second thought, which I also posted in Twitter and Facebook:

Dunno where, but I may do an chat as a movie/game lover w/limiting health issues. Do Creators even realize when they deny their loyal fans?

I’m planning on something super short and solo, since I can’t wrangle moderating the discussion and/or Google+ Hangout, which is where I’d do it.

On this subject, please direct responses to me at VivMuse@gmail.com, as my hope is to maintain privacy and no spoilers for what the episode may contain. I’ll likely include your suggestions/thoughts/experiences.

I’m really just wanting to get the word out there, since I’ve only seen one Creator in my social media circles offer up something with folks with vision and other accessibility limitations in mind. I find myself bringing it up (likely too often) on SpecFicMedia.com Presents: Consumption ‘Cast, which is a weekly attempt to join hubby Chooch and friends P.G. Holyfield and Christiana Ellis. Last night it occurred to me that Creators, especially of visual mediums, might like a few experiences to help widen their audience of prospective future fans.

(If I get my IT guy in to help with the running of the show, I’ll consider guests, too and other than those in my dream cast, responses VIA EMAIL will be first considered, if and when I do this project.)

Related thought:

The Creator thinking outside of the box by designing a game with Accessibility in mind is the very talented musician and game designer, Russell Collins. His successful Kickstarter for his game, “Tears of a Machine.

I backed it and I’m hoping to do a review after I play with some friends (possibly recorded for posting). I’m so very excited to try it, as J.R. Blackwell and Jennifer Rogers are also a part of the project and I’ve LONG been fans of theirs. Check it out!

Third thought:

 Happy Halloween!

May your fun be safe but skurrrry! Our Housies are all sick/just getting better, so healing vibes, prayers, or sacrificial meatballs to the SMitS would be greatly appreciated. It’s a super fun night in our home, and I’d hate  for our Wee Housies to miss out on any planned fun.

Wee Housies' Halloween excitement = each of my departures via garage until it comes down, since it is now the perfect hiding spot for real spiders.
Related Thought:

I’m linking to a segment on The Daily Show with a fave new comedic actress of mine Kristen Schaal. I loved her on Wilfred and 30 Rock, AND she does/did voice work for many of my fave animated movies/TV shows, like Gravity Falls (voice of Mabel, my spirit animal) and Adventure Time.

In the segment I link to (WARNING: NSFW or with kids in the room unless you want to spend some time explaining the whats and whys of a vagina costume.), she chimes in on the annual sexy-female Halloween costume debate and presents THE best sexual female costume EVAR. It went up for auction later to benefit a charity, so if you just want to see the picture and skip the interview you can do so by clicky THIS linky.

Yes, I wanted to own it. No, I wouldn’t have ever worn it out in public, tempting as it would be…

Fourth thought: 

If I am able to type coherently tomorrow, you’ll learn one of the reasons why 2013 is Lucky ’13 for me.

 

Distortion Filters Don’t Mean I’m Wrong

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

 

Body
Fibromyalgia is one of my diagnosed Health Blahs. I won’t go in to detail here other than this focus – a kind of pain distortion. There’s a neurological aspect of Fibro that allegedly “turns up the volume” on pain.  It’s a sort of biological input distortion filter that is described as a stereo having the volume tuned up too high. This is a confusing concept, as people are likely to dismiss my pain, thinking it’s all in my head. But I assure you, the pain is real.  And for me, it’s not even measurable, as in, “The pain should only be at a 4, but we can add another two points for Fibro distortion, for a total impact on the patient of 6.”

Whether caused by the immeasurable “volume” increase or actual pain, it hurts just the same.

Why?

Because pain is pain is pain is pain. 

The frustration is tremendous as what I report to the medical community sometimes gets taken apart and evaluated like most others don’t have to tolerate. “Oh, it’s the Fibro amping up the pain, you’re ok.” Or, “Keep in mind that Fibro distorts the pain, what is your pain level separate from that?”

Okay, how about I ask you, “Knife or spoon? You are going to be stabbed with one, and you get to choose. Obviously, you want the one that hurts the least and/or does the least damage. So, which do you choose?”

A spoon will hurt more but won’t go as deep, as easily. A knife will cut an artery, but how much pain will you feel?

Does it matter?

Sometimes, yes. In my experience, the standard 0-10 pain scale (smiley to pained faces on a chart I’ve seen in every ER and hospital room) works like gangbusters, especially when you have a doctor that will actually spend more time listening than their typically double-booked schedules usually allow.

 

Mind

About a year before that diagnosis, my therapist T-Pain, told me I have distortion filters on things I experience, both input and output, that impact my emotional well-being and create conflict with beloveds. The destructive power of these filters is immense and also far more common than I previously believed possible. Meaning, I’m not the only one with them, I’m just the only adult I know that has had it named (and admits it).

Essentially, I hear things (input) in such a way that I attribute all blame, shame or guilt to myself. All bad things are my fault. I do nothing well, and I am a constant disappointment to those I love or those foolish enough to love me.

It also means that at times I have problems communicating (output). My reactions: awkward, stammering, emotional, clumsy, partial, incoherent or circular in logic. The higher the stress, the worse the reaction.

Over a year ago, when my therapist helped me understand what I’m processing isn’t always what people intended to convey, I was thrilled.

Let me tell my loved ones, I thought, so they may allow me a bit more processing time to ensure that I’m expressing what I intend to express. Communication will be easier. Everything is based on communication, so everything will be easier.

A whole new world promised to open in front of me.

I now call shenanigans. Get the broom.

You see, in trying to leave a better footprint behind me, I have inadvertently opened myself up to having any misunderstanding or differences of opinion can be laid at the feet of my faulty filters. I don’t believe it’s intentionally unkind or dismissive, but it remains extremely insulting.

It’s as if learning that about me gives others some sort of legendary weapon in discussions. After all, it’s far easier to close the issue without examining anyone else’s behavior, because, hey, here’s a trump card that I’ve handed over: “She’s upset because of the way she neurologically processes things, not because of anything I did or said. There, that’s settled.”

It’s become a litmus test for me, finding how different people try or don’t try to connect with me. I don’t even bother telling people about my distortions at this point, since so many people have them but don’t see them or understand what they are or how to start the slow process of disabling them. (Hint: You can do it.)

 

Soul
It’s amazing how much easier your path can seem when you realize many around you are on the same path, trying to overcome their own stuff. Everyone has their own distortions, I’m finding. Since there’s no point in waiting on judgment or acceptance from others, I’mma just keep moving, doing my own thing, my own way. T-Pain says I can’t go wrong.

Call it chasing silver linings. (So fun!)

Call me Little Mary Sunshine. (Mary’s a lovely name!)

Whatevs, I’ll just keep trying to get through life with as much love, bliss and laughter as we can Katamari.

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

In that vein, check out my adorable Great Niece #2, Baby A. She’s about a month old and I get to meet her next month when Lil Momma (my far off niece) returns with her family for a visit. Oh, the excitement!

100% All Natural Burning Kyooootness

100% All Natural Burning Kyooootness

 

The Spoon Theory by Christine Miserandino

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

Finding myself in a whirlpool swirling with information from recent web surfing in Health Blahs (my name for my mixed bag of health challenges), and a few have really stuck with me. In my last post, I shared a find on techniques to improve memory and fought with myself about doubling up the goodness. I chose to split the two fave finds from that excursion, mainly to allow myself  more time to digest the second post.

The Spoon Theory, by Christine Miserandino has been percolating for a week now, but I am still thinking this is a pretty damned fine way to explain the daily challenges, preparations and planning I need to be comfortable and less needy for whatever may come. Even my therapist, T-Pain, as I call her, suffers from chronic pain and couldn’t find fault with it. To me, the explanation just sings many of the concepts I can’t express. 

Obviously, you have to suspend disbelief that you have any tangible way to predict with any certainty what the day has in store for you. Preparations are made and plans are laid to minimize chaos wherever possible. Much of the time, precautions taken end up not having been necessary. But, many times it’s just having done the preparations that gives comfort, rather than any actual need having been met.

Familiar folks: You’ve heard my whining before. Any new folks: I struggle with pain daily. Many that I’m close to also suffer from chronic pain, or love someone that does, and there is a sort of short hand when talking about such things. Traditional follow up questions to someone revealing a new health issue are suspended with an immediate and sympathetic acceptance of the news. This is typically met with a wave of the hand or a “Yeah, yeah, yeah. Anyways, …” It’s a shared experience. No filler words needed. Yadda yadda yadda.

But for those that don’t really get it, I find that it is tough to find a common language to have more than a superficial conversation without struggling to explain a response that is not standard.

As for what I mean by struggling to explain, for example, being fat (No platitudes, please? We’ve grown beyond that.) and not talking about being miserable/ecstatic on a diet and/or exercise program of one kind or another, I find that I am typically greeted with a sympathetic/energetic encouragement to get back into that cycle. If I, in a moment of honesty to strip away a lengthy avoidance resulting in no real conversation occurring, reveal that no, in fact, I really shouldn’t run. As in, I’ve been advised against doing the healthiest and most successful, enjoyable exercise I’ve ever done, I almost always regret it. People don’t really want to go there – to hear that will power can’t always get you through things. It’s terrifying to think, after a life time of doing, doing, doing. So, I find myself greatly censoring conversations to avoid going into that whole realm of explanations and we all have a good time.

It also appears with the standard, societal question, “And what do you do?”
*cringe*

Where’s My (Memory)?

Author: Vivid Muse  //  Category: Fibromyalgia, No Whining

Memory is an extremely problematic thing for me now. Even worse is the typical belief that if it were important enough to me, I would remember whatever it is. I submit the novel notion that I have no choice in what I remember and what is forgotten. It has nothing to do with my adoration or loathing of the subject.

In my great frustration, I glommed on to a new-to-me blog, Chronic Curve, linked by dear friend Andrea, who suffers fro many of the same health challenges as I. The blog is written by someone battling the effects of RA, which I do not have. I have Fibromyalgia. But the similarities in our situations are astonishing and I can’t stop reading the posts. 

So, memory, right. One of the posts has a number of pointers for those dealing with brain fog, fatigue, pain and cognitive problems. In reading it, I believe the tips useful for everyone, particularly those in a place where they must retain knowledge for current income or a diploma (future increased income). The learning techniques are fascinating, and I intend to try to remember to use them and report successes, if any. I’m already working on the Method of Loci to hopefully relieve a social issue of mine that has recently worsened. *fingers crossed*

If you do give it a try, report back? Pretty please?

My Review of The Avengers **Spoiler: I Haven’t Seen It and I’m Whining About It**

Author: Vivid Muse  //  Category: Fibromyalgia, Vestibular Migraine, Whining

Boring backstory:

Having been dealing with neurological issues for over 2 years now, and with the Fibromyalgia diagnosis recently, I have finally yielded in the struggle against my limitations in the arena of movies and video games. Lookit, I hung in there a lot longer than I should have. I saw Scott Pilgrim vs. The World THREE TIMES in movie theaters, in spite of migraines, dizziness and nausea. And I never even saw the end boss fight with Gideon until a few months ago on a crappy old CRT television. I had always, in the theater and on high def screens, had to cover my eyes.

“Just keep closing your eyes on those scenes,” you say. “Big deal, buy your ticket and quitc’her whining!”. And I do. But, as my eyelids are not light-proof (yet), the flashing battle scenes pulse, muted, through my lids into my noggin and it hurts. Bad. And usually for a long time after.

So I have resigned myself to only putting myself through it in case of extreme emergency, like Harry Potter’s final movie installment. After watching multiple trailers, I decided I was going to have to wait until this one hits the small screen.  But I have been house-bound for the better part of two weeks, and am nesting in our new space. As a result, Chooch saw The Avengers with housemates Phil and Tina on Sunday, after dropping me at a nearby Target.

Guys… I was able to spend their entire viewing time… shopping. This does not sound like a big deal, but bear in mind that I am not driving right now. The combination of my symptoms, medications, side effects and onset of more Fibro issues make it unwise, in my opinion, and I’d rather be hobbled than risk injuring anyone.

Today I got everything I needed for this phase of rebuilding after the sale of our old home, and for preparation for LT’s arrival next month. Yes, I said LT’S ARRIVAL NEXT MONTH! The ticket has been purchased, and we are hoping for a wonderful fun-filled summer with him.

Back in the car after they picked me up from my shopping excursion, I felt a LOT of pain, both migraine and what felt like every joint between my toe nails and my hips. But it felt so good not rushing in an effort to prevent delays for the person driving. And it felt good to feel like I accomplished some things, even if they just moved from one category to another on the to-do list. This has really become a Big Deal for me. I usually hook a ride with people going here or there, and cram all I need to do in a short time.  I invariably forget things and it becomes a hassle, so shopping has become a big stress for me.  Shopping with a 2.5-ish hour timer? Heaven.

Hearing them describe the movie, I was more saddened than at any other point, especially as Tina described how there are some movies you just have to see in the theater for special effects, and I do and always will agree with that sentiment whole-heartedly. I just wish there was also a less-spiffy version for those of us that can’t handle all the special effects and high volume soundtrack at the same time, but would happily spend money seeing it on opening weekend. I have always been willing to ante up for 3D and IMAX when worthwhile? Well, now, I’d pay extra to see a visually muted version. (Insert the “Praise Baby Jesus, it’s not cancer or lupus” mantra here.)

It’s a hard thing to settle for, but I am the mom that had her husband and two sons take her to Iron Man on Mother’s Day, years ago. I miss midnight openings. I miss the kerfuffle.

I kept asking for more details from them about The Avengers, and I became aware that although I was very jealous as a result of my necessary decision, I decided to feel satisfied that I accomplished useful things today. I think this is what “Realizing Your Limitations” feels like.  It’s something I’m supposed to be doing. And, in truth, it’s helping me get through the day, but I sure as hell don’t like it.

Joint Pain Diagnosis and Aftermath

Author: Vivid Muse  //  Category: 5k, Fibromyalgia, Too Long For Twitter

Chooch and I just returned from the rheumatologist after having blood work and x-rays of my feet and hands. While there is something minor going on with my thumb/wrist joint-thingy, she was able to rule out Lupus (again) and rheumatoid arthritis.  The crackly noise my knees have made when I bend them a certain way? Well, in spite of the entertaining response when I creep people out with a demonstration of it, it actually goes by the less hilarious name of osteoarthritis.

The immense joint pain, which when it is settled into my feet I liken to walking on broken glass when on carpet, is due to Fibromyalgia. I know at least a half dozen people that have it, and the amount of pain they live with is more than a little daunting. These are people whose entire lives are changed by their pain, and it doesn’t matter if they are “good” people or “bad” people or educated people or uneducated. They are Altered. Even worse, their loved ones have to deal with all the complications that goes along with living with someone that has chronic pain.

And let’s not forget that this is another scoop on my health problem ice cream sundae. I have a history of heart disease and diabetes on my Dad’s side. I have breast cancer, arthritis and osteoporosis on my Mom’s side. I have been out of work for the last 2.5 years while doctor’s try and then give up on finding something that can be cured for the migraines, dizziness, fatigue, nausea, stutter, tremors and “brain fog. ” I have TMJ. I was diagnosed with Rocky Mountain Spotted Fever. (I say diagnosed in that case because we have no idea how long I’ve actually had it, but it’s believed to be over a year before detection and treatment, when the ideal is within 8 days. I’m still trying to sort out what long-term effects that leaves me open for, although I’m starting to wonder if I should just leave that door closed. Just for now.)

Adding Fibromyalgia to the sundae actually accounts for a lot of symptoms that have emerged in the last six (?) months: joint pain, memory and mental function, tension or migraine headaches (there has been a dramatic increase in both, but I was chalking it up to a medicine change in recent months).

*****************EDIT***************

I just returned from therapy and am adding on to the post I had already started composing. I only mention this because it may have impacted my mood and it may appear abrupt  to you, but many hours have passed since I started this post.

As has happened a few times previously, I had therapy on the same day that something very troubling has happened, the diagnosis whined about above the stars. Well, according to T-Pain (My therapist, and I mean the alias in the kindest way), it’s ok for me to wallow today.  As long as I don’t linger for too long, I can throw myself a Pity Party. After I get bored with that, I will take action as needed to improve things as much as I can.

I have already taken steps there, and am hoping to take my first water aerobics class by next week at the latest. It’s my first little baby step back onto the path to half-marathon training, and even if I don’t make it that far I will, in my own experience prior to this diagnosis, feel greatly improved just by being in motion as often as possible. And if you need any proof that this means a lot to me, bear in mind that means I will be wearing a swimsuit. In public. Me, who’s gained 40 pounds since June of last year.

It just gets more and more awesome the more toppings you put on the sundae, eh? All I know is, if I’d known that my last 5k might be my Last 5k, I would have run like I was on FUCKING FIRE instead of making adjustments to minimize later pains. I would have run like Phoebe on “Friends.”

She also had me do “art therapy” for a bit today, handing me a blank sheet of drawing paper and a box of colored pencils. She drew a vase and told me to fill it with what was inside me. Guys, it was so fun. Even better? She wants me to continue doing it. Daily, using drawing paper, colored pencils or  and nothing but a giant circle as my guide, I’m to fill it in however I feel like filling it in. I think I’m even going to attempt using it as a meditation device.

Even though my Mom was ** an amazing artist, I gave up on myself as one a long time go. My crafts over the years included replicating someone else’s design by:

  • stitching tiny X’s,
  • using any color I wanted (!) on someone else’s cast pottery and ceramics,
  • crocheting, knitting, latch hooking, really any craft involving the knotting of yarn,
  • singing along to the radio,
  • attempting to learn a song on the bass guitar,
  • baking other people’s recipes
  • creating the Stargate quilt with my husband.

My instances of artistry are few and far between as an adult: painting one picture, writing one novel, casting and painting some clay to my own odd amusement are the only things that come to mind after a good 5 minutes of thought and a discussion with my husband. He thinks the quilt should be on this list, since we created the pattern for it. I call shenanigans because our sole intent and execution was to replicate the design as precisely as we could within the time and money constraints we had at the time.

But that’s not what this is about. And by silencing the left side of my brain for a while, the right side stretch and move unfettered, possibly even showing me tangibly “what is going on with me” as I deal with all the challenges in front of me/us. It could be useless, or it could be cheat codes to some cool level previously unaware of, that will help me deal with the stresses and minimize their impact on my health.

*crosses fingers*

I have to admit, I’m getting kind of addicted to my epiphanies and changing of core beliefs and all that jazz.

And if you have ice cream cravings now, like I have ice cream cravings, you have Mur Lafferty to blame for it. She mentioned it earlier today and I’ve been craving it ever since. Thanks, Mur!

_______________
**Someday I will not have to backspace to replace “Mom is” with “Mom was”. Although T-Pain might be shooting for that, I don’t think I’m looking forward to it.