About a week or so ago, Google changed the way you can access images in search. For years I've been able to get to cached image storage after websites went private or even deleted. That button is gone now. Sourcing images back to original original source technically no longer exists. This might seem irrelevant to some, but it's actually huge in a world of restricting access. It's not that big of a deal for me, since I mostly play with memes (and I try to give credit with link backs whenever possible), but for some people this means no longer being able to source original news photos that have gone viral. Something to think about.
Youtube opinion accounts are being shut down this last week, whether they are monetized or not, and at least one person has been interviewed by a major television news network citing the algorithm fallout already affecting his real life business so badly that he lost it. That was fast. Was I the only one to notice how fast that was? Anyway, the U.S. is being virtually cut off from search fields across medias, not out of malice, but out of opportunity. Hands are being tied as the FCC and internet regulations are allowing much bigger hands to insist on removing what gets in their ways. Facebook has been restricting feeds and posting capabilities for a couple of months, judging by the complaints I've seen, twitter went on a bot purge cleaning house (I wonder why they only picked Russian bots, because I'm really tired of purging the spam and porn and automated vitriol from the rest of the world, as well), and as accounts shift to new hosts hoping to survive, the web is shifting like a ship on a scary ocean. Well, at least for Americans. Funny thing is, I don't think most people are noticing. Unless you are following live news broadcasts and live feeds and noticing some things are literally being scrubbed back off the internet within the hour, you really have no idea. I've been on the webs since 1994 and have never seen anything like it.
~~~~~~~~~~~~~~ That was last night. This is today.
I think I'm getting my life back. I coughed myself into a what feels like a neck sprain through all that flu and cold virus stuff back to back, and I made an appointment for next week to talk to someone about checking on possible herniated incision since it's still so soon after gallbladder removal (a little over 3 months, but 18-24 months for complete healing and incisions always remain weak spots), but that's what coughing does, right, it wrecks you up and makes you miserable and then it's such a relief when it's over. Hopefully it's just an acute fibro of the abdomen flare, and that's actually a real thing and sucks a bit.
From Fibromyalgia and You- "It is a systemic disease that mainly affects the muscles, their attachments (tendons, ligaments) and coverings (fascia). Fibromyalgia may be considered as soft tissue rheumatism. Fibromyalgia may also affect many other parts of the body, including the stomach, bowels and female organs."
I am noticing, though, that even having only 2 contacts with anyone for any kind of hands on physical therapy since before Christmas, my pain levels are significantly lower and much more tolerable (a really nice side effect is my general anxiety being at an all time low), and I really think that's because removing the diseased/infected gallbladder was such a relief to my entire body that many systems are going back to a normal I wasn't aware could exist. Just living with that amount of localized inflammation must've taxed my poor body 24 hours a day for months and months, and now just having that gone is making a whole lot of difference how the rest of my challenges are able to be internally addressed. Even when I should probably think I'm feeling kind of miserable, I feel so much better than I used to. I still can't believe I breezed through the actual influenza B. Really hope the A misses me. There are people around the area who've tested positive for both at the same time, plus we had at least 2 separate cold/crud viruses circulating, as well. Got pretty crazy.
I feel like this is my most boring post ever, so I may as well share that my house is a wreck and I don't care because I finally got to sit and watch TV, and it felt gooooood. I almost never see much TV any more. I thought they did a nice episode with Carl, although it felt like Negan should've been interrupting them any second, so I was way more jumpy and anxious than I usually am watching Walking Dead. And then tonight I sat through Revenge of the Sith on TV even though I own it, and used the commercial breaks to get supper put away and coffee ready for tomorrow and my pajamas on and stuff like that. Bunny and her mama have been feeling so much better enough to run around with friends again, so it's been a bit blissful just being able to sit around and let my mind go blank.
A moment of appreciation for our troops in Kazakhstan. We have a Lexx fan over there. I always feel a bit humbled when I see hits like that on my Lexx blogs.
Most of the rest was written yesterday, what I call 'live blogging'. I imagine the general public envisions 'spoonies' laying around on the couch being tired all the time, and oh how I wish that were the simple case yesterday...
This is a writing exercise while I deal.
Years ago, all my symptoms were a big vague nasty mess. Over time we've been sorting it all out, alleviating this, working on that, slowly sifting all the things down to specific locations and causes, which isn't easy to do with referred pain from nerve injuries on top of a nerve disorder like fibro.
Today is one of my tough days. It's not anything new, or particularly different, except that now we're much more aware of what's going on, and it's becoming so easy nowadays to connect symptoms to triggers. Once this particular thing gets triggered, the symptoms get very confusing. My blood pressure spikes to the moon, I feel confused for awhile, sometimes my throat hurts for no apparent reason, ears ring like mad, face goes numbish, a maddening itch behind my eyeballs drives me crazy, and occasionally some sort of headache shows up. I've lived with this for 35 years, and it's been weird enough to make EMTs jump and flummox doctors. I've lost count of the variety of imaging scans I've had of my head, neck, and brain, with no obvious causes. Things that keep being ruled out are multiple sclerosis, autoimmune flare in the blood vessels in my brain, strokes, tumors, syrinx of the spinal cord, bone spurs, whatever you can dream up, they've looked for it.
My latest conflicting treatment challenge is CPAP. I love it. I sleep so good with CPAP. My apneas are down and I'm having a really good spring in general compared to years of extremely difficult springs, but it's focusing my attention now on this other thing.
I survived being ejected from a car and lived with and tolerated thick scar tissue that grew around one helluva whiplash for decades. I've been through so much pain that it almost seems ludicrous to still be having problems since we've been able to knock the pain levels way down via several years of physical therapy and now sleeping so well on CPAP. The problem, as much as I can tell now, is laying a certain way that puts pressure on the craniocervical area for too long, and then spending the next several hours or a day getting through some pretty outrageous blood pressure spikes as that area readjusts to the pressure being taken back off from laying on it. CPAP sleep hasn't necessarily made this worse, but it's almost accidentally helped highlight it since I hold still much longer at a time in my sleep, and since it's also helping me feel better enough to notice more specific cause and effect.
I lived with that pressure for so long under so much duress that you'd think this would be a piece of cake. Sudden high blood pressure coming from the top of the back of your neck feeling squeezed right under your skull is technically considered a possible emergency situation in some cases, since it could be from so many dangerous things.
It's very uncomfortable living like this. I can hardly believe my normal everyday life used to always be this. I've come to enjoy relief from this more often that not nowadays, but once in awhile, all my attention is riveted to waiting out another triggered event as calmly as possible. There is nothing more miserable during this kind of event than an ambulance ride, strapped onto a gurney putting pressure on that spot through all kinds of traffic for at least half an hour (because I live in Mirkwood) and then spending another 6 hours in ER and finally being offered a pain med that I'm not supposed to even take because there is nothing else they can do, and the pain med super spikes the apneas, and then it's all about recovering from going to the ER. So... I'm blogging instead.
I've talked about other triggers I wait out on some days, like costochondritis pain mimicking heart attack or pulmonary embolism pain. Thank goodness I'm not having actual PAIN pain today, but it's still very unnerving. I've learned how to remain calm even when my blood pressure goes nuts and it usually comes back down over time. I'm still holding 157/102 a couple hours into this, and if it doesn't come down I'll probably go in. My neurologist has a pending MRI on order if symptoms change, and today was unexpected, so I've called and got an appointment for this week, but ER might just do it themselves if I go in.
And since this may be involving CPAP, I might have to pull my sleep doctor in for opinions. I keep telling myself people can live for years with this kind of stuff, and then a little voice says "Yes, and I already have..."
~4 hours later~
Triage just checked me in at 201/115, so I guess I made the right decision coming in. This isn't my usual flare response. Kinda going into overkill, so super flare maybe. I've been firmly removed from grocery duties going forward, per @bonenado. As careful as I've been not lifting Bunny or doing any heavy work, I guess something caught up with me and now I'm paying for it. (A 15 pound frozen turkey has inspired Scott to shut down all my grocery shopping for awhile... I make poor decisions when I'm shopping alone, and this isn't my first backlash on overstepping weight restrictions.) Welcome to pain management 501, where it's all so old hat that I'm the most laid back person in a waiting room full of people popping with emotions and misery. One guy got so hostile with fear and panic that security had to escort him to a private room and hold him.
I wish @bonenado would live tweet his thoughts from the waiting room. He'd be super popular if he'd live tweet at all, because his sarcasm is unique to him, kinda cartoony. I'm just glad he drove me in. I told him he could go home and come get me later, but he'll entertain me by alternately crabbing, sniping, and mocking in really funny ways.
I've reached nirvana. Everything is surreal and I'm almost floating out of my body. The pressure around my upper neck is unreal.
And the cosmos perfectly timed that with triage calling for Randy Marsh. It's official- I'm in cartoon land. Wo, and the cops just escorted that other guy out.
~~~~~~~~~
Ok, now it's today. It's not unusual for my blood pressure to spike during pain response. What's unusual is for it to not come back down after 2-4 hours, or to keep steadily rising. High blood pressure doesn't frighten me any more. I've lived with pain spikes for so long that it's become more drudgery than anything- oh, this again *ug*, guess I'd better go make sure I'm not heading for a stroke... You know, because my mom went through hundreds of TIAs before she graduated to several major strokes. So far I've never had one vascular accident, and my blood pressure has gone much higher than my mom ever clocked hers at. At the core of my blood pressure management is pain management, so this is a pain management problem. But I wasn't having 'pain' this time. Just that godawful pressure at the base of my skull feeling like my head was being pumped up like a water bed.
First thing is always look into what's going on in the area, and the ER doc x-rayed and dx'd neck strain (one doctor years ago couldn't believe I was walking around with a "sprained" neck, he couldn't believe I lived like that for years) and they mostly just waited out the blood pressure and sent me home. What was so weird to me was that this is the first time I've gone through that without PAIN.
Any big change in a major nerve trunk area is a big deal. Not feeling pain isn't always a good thing when the ship thinks it's going down. I *hope* this is a good thing, that I'm progressing into a more healed state, but even a mild sublaxation putting pressure on the nerve trunk right below skull can be ~not good~. You wouldn't believe some of the long-term treatment options some people go through for that kind of stuff.
Just a reminder- anyone thinking I might be making a big deal, just wanna see you live through being ejected out of a flipping vehicle, which I didn't talk about or bring up for YEARS while I was hiding all kinds of problems and challenges, and now that I'm aging through all this nerve damage, I'm finding out just how much suck can really suck. Every day has to be strategically planned or I have a very bad day. Yesterday was me dropping the ball.
Anyway, I'm fine, but my neck is super tight and the rest of the week is designated recovery now. Just rest and keep my workload light. I'll visit with my neurologist tomorrow (:edit: Thursday, lol, just discovered it's not Wednesday) and see if he wants to continue checking on this, possibly cave to a steroid shot in my neck if he suggests it (*ug*), continue with my home core stabilization exercises.
>=l Stupid frozen turkey... I can't even carry 15 pounds 25 feet from my car to the fridge.
Ok, let's focus back on having a good day. 😁 Special nod to a couple lurkers in Europe who I know have been fandom webmastering for years through ugmo conditions (I've super lurked you, too), and the rest of my day is scheduled out- be silly, play minecraft, fold laundry, be silly some more, eat something, get supper laid out, maybe get a shower, be extra silly and play more minecraft at the same time before my people come home, and then love them while they eat supper and decompress from work and daycare, because they're why I'm still here hanging on.
I wish my parents had had meme humor years ago. This clicks to an excellent post by a cool parent.
I'm currently barely functioning and about to slide into rocket fuel. Careful with this one, if you click you'll get sucked into pinterest and never come back.
Nearly to the end of my physical therapy extension, and I woke up in such a mid back left rib shoulder blade spasm that I had to arch over chairs and the sink and other crazy contortions before I could even lift the coffee to pour a cup. Knocked a painting off a wall, broke right out of the frame. Wish I could say my super klutz outfit is in the wash, but apparently I slept in it. I don't know what it is about physical therapy that gets everyone so excited in there (all my little cells), but this is my per usual, needing a break from PT. Wouldn't it be cool if we could actually see other people's pain like this? I bet we'd be real surprised what people all around us live with and never say a word. Click for a much more organized fibro blog than mine.
Ok, first cup down, second cup and then a shower and then gogogo out my door to a stack of stuff. I can do this.
Since @bonenado is off today and chauffeuring me around, I'll be free to space out and think about what else I want to do in Mo Creatures. The weekend is coming, and I've been piling up the enchanted armors getting ready for the big melees while my clan has been stuck at work irl.
Pretty sure this was a regrettable maneuver. Papa wound up having to lift her over and over after that.
I'm one of those chillaxed meemaws who remembers being a kid.
I remember wanting to experiment with different kinds of utensils and people sternly telling me "do it right" or it would be taken away. Scientists and artists and philosophers don't do things 'right', they create new and exciting ways to see the world.
This one is a bit longer, but it turned into 'get meemaw' and all heck broke loose. Maybe that'll translate to regionals in volleyball and baseketball down the road, like her mama.
Today is more physical therapy and a couple of errands. I have 2 days left to finish my library book. It's a one-time loan via mobius, I can't recheck it. It'll be a challenge because heavy book is a lot of arm work, hard on my neck holding still to read even if I rest the book on a table, and still kind of hard on my eyes because nerve overload and headaches, BUT it's the coolest book and would make an awesome movie and I really wanna finish it. So I might not be tweeting much for a couple of days.
And @bonenado was awesome and totes replaced my $80 phone case yesterday evening because it's been taped together for months, and no matter how crazily and violently I drop, toss, and ricochet my phone, my phone still actually works just fine, so this is the best case ever and I'm actually saving the original for backup in case I destroy this one even worse. It's leather with all those tiny rock crystals glued on, so it takes loads of impact. It's called Brilliance and you can get it in several colors for several kinds of phones. If I had the right phone I'd have gotten rose gold. I got the last one for S6 in the whole store because it's discontinued.
I'm already time skipping, have been thinking for several days that we're in December now. I don't bring it up much but there's this thing- Is Fibromyalgia Aging You?
This is still so new that the studies aren't really completed enough yet to give definitive answers one way or another, even though you can run into a list of headlines screaming about fibro and gray matter loss. I've always known I'm losing cognitive function, I've been in and out of glitch and super glitch, memory impairments galore. I can feel my nervous system going down in super slo-mo.
It hasn't killed me yet. I can still laugh in the moment with my family. Pinky blog will help me stay focused, and I will continue to do my things.
As a generalized observation on personal blogging, I think self discovery through things like autism and ADD and other diagnoses, chronic illness survivalism, embracing depression and other mental illnesses- seeing ourselves through what we share with the world is the new human expression. Adding ourselves to the growing library of the internet is how we find ourselves in the global human race. Looking at ourselves and watching others look at us giving us ways to see ourselves through different eyes is our new method of healing. Learning to see each other, feel each other is the new age.
"I was here."
"I see that you are/were here, and I like what you did there."
Us.
It's been awhile since I had some Benny C on here.
Today is a little delicate, super spastic fibro spaz in lower back started coming on after the bed at the sleep clinic. It wasn't a bad bed, actually slept ok, but I'm so used to getting up to move around or switch to the couch to prevent this kind of muscle response that it's feeling very 'old days' before I figured all this stuff out. I may be having to switch off ice and heat and doing lower core and stretches off and on all day just to keep walking, and I daresay sitting to 'rest' won't help as much as make it worse. I'd say this sucks, but saying stuff like that prematurely tends to make the cosmos bwahahaha in You think THAT sucks? Try THIS and then I'd probably wind up staggering from countertop to chair back kind of thing wishing I had a walker or a couple of canes. In the old days I'd be able to hands and knees if I had to, that's very simply out now. I cannot resort to destroying what's left of hands and knees sloppily dealing with this without strategic planning.
Those of you with alt remedies on the tip of your tongue, don't even go there. If you really think I haven't tried just about everything short of risking paralyzation in surgery, you either don't know me or you're dumb, so nip it and don't even start. This ain't my first rodeo, and I've already gone through several rounds of not being able to walk, one lasting for months. Unless you've lived like this, you can't fathom it, so back off.
I've thought a LOT about Stephen Strange wrecking up his arms and hands in that car wreck (pre Doctor Strange thoughts). I know what it's like living with all that nerve pain, losing control of fine detail function, the frustration that comes with all the clumsy little things your hands go through. I totally get the guy going from arrogant to pissy and grim determination to f* it all and keep plowing through anything to find some kind of answers or relief, because the only alternative is to quit. Most of you comic book fans are loving all this hype, but not as much as the fans who know what Doctor Strange is going through emotionally being trapped in a crap body and feeling useless and hopeless and very angry about it. It is all our dreams to be able to overcome our challenges and be useful or to be able to once again express what we are good at without ugly pain and clumsiness in the way.
Ok, enough of that. I've got things I need to get done today in between and around all this twingy back stuff, so time to get all over it. Definitely need some go music. Ok, here we go, totally dorky and something I can move around to.
I started this post yesterday. If you have depression and are easily triggered, please exercise truckloads of caution if you try sticking through this post, ok? I really went there.
From a post I made 4 years ago at janikabanks.xanga.com. The html is abysmally screwed, but I fixed what I could. Only one person has ever been told what I intend to do with this, so the private title is in the queue and one of the projects I'm working on.
My fave thing ever is pirates. I read everything I could get my hands on about pirates when I was a kid. Captain Blood by Rafael Sabatini captivated me at a pretty young age, and I absorbed the The Count of Monte Cristo by Dumas (j'adore Dumas!) almost through the pores in my skin. My fave ever Pirate movies are Blackbeard's Ghost, Yellowbeard, The Pirate Movie, Cutthroat Island, and the Pirates of the Caribbean series. My other fave 'ship' movie is the Horatio Hornblower series. I didn't grow up anywhere near an ocean or even a lake, but I have this kinda private thing about ships. I'm working on my own thing now, but a few years ago, this is the kind of stuff I liked doing.
Ok, hopefully that doesn't kill the wrap on the rest of the post. I had to go after those words heading clear out to my livingroom and wrestle them back into the corral. *preview* Ah, yes, working just fine now.
This week is already weird, and I desperately need to pull back into a touch base here, so let's just start off with my face feeling prickly and itchy. Nothing puffing up, yay! Just the nerves. The first time it ever happened I was in my late 20s and my doctor tried me on several different meds until we finally just gave up. The phantom itching is maddening, and after a few years of absentmindedly scratching around an eyebrow or beneath my lip or by my nose, a doctor commanded me to STOP before I wind up with cellulitis. Thank goodness it never got to that point! SHOULD YOU SCRATCH THAT ITCH? MAYBE NOT
So I switched back to beta blocker, histamine level spiked (yay, allergy season!), and now my face is all itchy and prickly for 'no reason', but it's all the same trigeminal spots I've always had to deal with, so apparently neurontin and cartia together impact my nervous system differently than neurontin and my original beta blocker dose together. Incidentally, I can't prove anything because my weight stayed steady this whole month, but I've worked really hard on the 1500 calorie thing, and I seems like whatever I lost got replaced by fluid retention. I swear I'm more jiggly now. Not cool.
Med changes, yo. At least I'm not craving brownies like last month. But srsly, where's the tranq gun for the maddening bursts of itchies sparkling up behind my eyeballs. Ok, enough of that. I'm very seriously thrilled it's not doing this down my throat. Those kinds of days are terrifying.
K, got on here to FOCUS. I need a super power point, hang on. (Coming back to this sentence during proofread and just shaking my head.)
Ok, Autisable went live today. I'm not staff, but I was one of the early contributors. Not paid. This is not for profit, I think. Anyway, Joel started this community of networked writers on Xanga before the big server move, and I've watched him survive and rebuild pretty much from scratch, and that inspired me more than just about anything to hang on, keep working on my own stuff. Again, for those of you who've never lost everything you've built in a server move, including specialized coding and a really excellent cutting edge mobile platform, the stress is unbelievable. I would compare it to an internet earthquake or hurricane or something, just everything wiped out and gone and having to pick up shreds and pieces and literally start over with a new foundation.
MY POINT. See what I mean, I'm super scattered because this itching is so distracting. Anyway, I've created a special Aspienado facebook account to share my Autisable submissions. Autisable is what inspired Aspienado to come out in public and start working on Existential Aspie. My tagline will hopefully be the preface to my book.
If you could go back in time and do one thing, what would it be? I would go back and give my mom a big hug and tell her everything is going to be ok. –Existential Aspie
I need to review a few other things going on. Organization!!! Thank goodness for back to school. Ok, went to my phone to find a pic and played on FB for 15 minutes. Here we go. This is my back to school purchase, along with a CD holder not pictured (because I have CDs scattered all over the house and the cases are getting destroyed and I keep losing CDs the way people lose their keys). I've pulled together a reading list for the year (sploit, I'll send you the books as I finish them, so don't buy them), and I've decided I need to get back to watching a show during the day while Scott's gone to keep me off minecraft when I go ditzy, because I've lost swaths of time 2 days in a row switching back to the beta blocker. I need to focus back on time awareness through the day, so I'm creating a new syllabus for myself, hopefully it'll get me through the holiday slide intact. (omg, I forgot about the time I discovered a search for 'holiday slide' landed me back on this post.) But yes, I do need to share actual real brain stimulation going in for all the people (including my psychologist) who wonder if I'm taking the broadcasting out part of my life too seriously. You people really have no idea what I actually do most of the time, so guess what, I'm giving myself book report assignments through the fall.
I think I shared my new backpack on twitter last month, hang on. Yes, here it is. Aspienado is really bad to get into ruts and use things till they're so messed up or messy that I'm a walking disaster, so freshening up the ol' bugout bag was a must. I treated myself since my last backpack was a $3 leftover after Walmart had been savaged and left nearly bare, and it was initially targeted for ten year old boys and really didn't hold that much. This one holds my whole house.
I've also liberated my new umbrella of its tag. I've been using really old and almost broken umbrellas since college (I cannot believe I've had that blue umbrella since the late 80s, THAT tells you a lot about my ruts right there, and the green one has to be nearly 10 years old itself), so when I saw this one in a pharmacy, of all places, on a rough day, I pointed to it and @bonenado totally got it for me. I'll have to take care of it because the entire handle is wooden and has an auto button to pop it out, very James Bond kind of thing. I know, some of you are questioning the whole going more feminine thing when I've been neutral for so long, but butterflies and roses have special significance in my family, and I really did have to have this. Plus there are pocket watches (me and time problems) and keys (key to the Lexx), so yeah. hello goodbye
Grasping that becoming Pinky to the world is how I am emotionally surviving isn't necessary to understand, but Bluejacky coming back out to play now is extremely significant. It means I'm healing.
At least in my heart and soul and mind. My body...? This is a hard summer guys. All I can do is just keep writing until I literally can't any more. It's too hard to tell if I can still hope for progress, because I'm sliding down so hard I'm not sure I can finish what I started. I keep telling myself hang in there 5 more years. I can make it 5 more years. I mean, it worked when my kids were in grade school and middle school, kept shooting for target dates and actually kept making them, and even though I honestly never dreamed I'd make it this long, I know the only road forward is harder than ever now. blinking in the light (the original reveal)
If you've never read Hinds' Feet on High Places, THAT. @bonenado and I had a really good talk over this last weekend. If I'm in final sprint (and it could be another ten years, I can't see the future), it will take everything I've got.
I'm just glad I'm getting all my head stuff worked out. I feel like I'm getting all my homework done on time. Assignment: Earth- You will occupy a body and learn to use this body to play well with others, share your toys, and learn wisdom. This will count toward your dissertation on Why We Are Not Mean To Each Other. Once you've satisfactorily completed this assignment, you will level up and move on to other things. Some call this the Hard Class, the pass or fail class, but think of it as extra credit and you'll be fine. You'll each be given Time and Space allotments to complete this assignment, and the only thing you'll be graded on is whether you manage to pick up on what becoming an autonomous being is all about. The only way to learn this is through experience, and you won't be able to take your notes with you. Good luck.
I need to be sweet and remind a few people that I'm not critical, ok? I'm just facing that I'm heading there. We don't know when or how soon, watch me make it to 80 now, right? But for those who are still pretty new to the real me, yes, this is actually how I have lived raising my kids, day to day, week to week, month to month, and year to year. I haven't taken a single thing for granted since the car accident.
But the race is on. And I wanna win.
All this writing encourages me, so if this is bothering you, you need to go do something else, ok? I'm *focusing*. Writing is just as athletic as any other sport. You plan, you practice, you assess, you practice some more, and you keep doing it and doing it until you're good enough to play hard enough to win. Sorry so long, but it's just that kind of day. Minecraft isn't helping right now. And I don't wanna talk about this on twitter and facebook. I only link it so it's easier for people to check on me if they want to. BACK TO SCHOOL. The syllabus construction. So among the reading challenges and rearranging my days so I'll be more aware of time and consequently more productive, I have several projects I want to finalize this year. One of my biggest challenges is this mobile office and the sudden interruptions. I've been working on organization for years, and it's amusingly hitting me that it's been so long that most of what I need to organize is truly useless now, and I can start throwing a lot of it away. When we were going through bankruptcy, we had to compile and keep tons of information, same thing again with my disability case, and between insurance changes and EOBs and all the junk mail on top of it, plus bank account stuff and keeping bills straight and forms filled out in timely manners, and then taxes and renewing car plates, and all of this being regularly poofed like leaf piles through birthdays and holidays and sick days/weeks and all kinds of other stuff, and then tech fail, omg you guys, I have lost my book contract in the shuffle so many times... Yes, both digital and hard copy.
But I have to keep my head on straight enough to remember to write groceries down on a list and then actually follow that list, and I'm failing simple list goals just running to Walmart, so of course I feel overwhelmed. But look at all the stuff I keep getting done. Look what I did this morning. I grabbed content I already had and used it to help promote a site announcement. I feel good about it, I feel like it helps point me back in the right direction, and I feel like the rest of my day is ok now because I spent a few minutes doing something useful. It doesn't take much, just a little bit every day. Five minutes. It really does add up over time.
So, August. My anniversary is tomorrow. I'm glad I wrote that, I got @bonenado a card and hid it, so now I'm going to go find it. I'm usually too scattered to even get a card, but I actually have one this year, and now it's out in time, instead of laying in a drawer, yay! Ha, it might be the last one he ever gets if I keep staying this scattered, though. You wouldn't believe how utterly ditzy I have felt the last 6 months.
*screaming gear change because that made me think of brain fog*
I was in my 20s when I was diagnosed, and I got that diagnosis within a month of seeing a doctor who fast tracked me to rheumatology because I'm such a severe case. They knew next to nothing back then, even though they already had criteria established on how to diagnose. I know from experience that getting back to a normal life might never be an option for me, because nothing we've ever tried has worked very long helping me pretend normal is even an option. Fibromyalgia Has Central Nervous System Origins
I got disability on the first try. What Does It Take For Fibromyalgia to Qualify As an Impairment Under the New Ruling
What I'm saying is that I'm one of the first patients in the medical field to be diagnosed so early and live this long with it, and they don't yet have a 'lifelong' definition for this kind of thing. They're talking about cases that last at least 3 months and still insisting there's a way to live a normal life, and I'm not seeing anything legally or medically definitive on someone who is 25 years in on something like this. There is no research on how people age through this. It's still only conjecture, and they're still studying it. Fibromyalgia linked to decreased brain connectivity
We've ruled out MS, AS, RA, and Lyme is still being considered a nonplayer even with antibodies. This article is only a year old. Fibromyalgia now considered as a lifelong central nervous system disorder
It's about defining what living a normal life actually means. I'm fighting to stay functional in my own home. I think for me, it's more about living a useful life. What can I still do when it seems like I can't do much at all? I can type words.
I have made it through at least 2 1/2 hours of what I call a really rough morning. I was kind of laughing with another snarkalec one day about how those of us in the most pain have such blow off phrases for how we feel, yet those of us who live like this totally get the code. I have a pain rating system that most people don't have a clue exists. The doctors use a 1-10 scale, and I insist I'm using the Princess Bride scale (not to 50!) in a 1-10 world, and on 'really nasty' days, that line runs right off the scale and keeps going around every wall in the room. If I'm 3 walls over, it's a shitty bad I'm in hell kind of pain day, and there's no way I'm going to talk about it beyond calling it a nasty pain day. There is just no way to convey context in a world where simply having a migraine and an emotional meltdown rates a 10 (and I do apologize, I don't mean to trivialize that at all, it's just I'm so experienced at that being a side order on a main dish of fibro). If I say in a doctor's office I'm at a 10, I'm either violently throwing up, unconscious, or spasmodically weeping with no way to console or comfort me, and believe me, I have scared ER doctors even after pain shots.
Pain scales are extremely relative and subjective, so I've had difficulty trying to convey meaning to what I'm attempting to communicate to a doctor who hears '10' from people calmly sitting in their chairs without even a facial flush going on. That has actually happened right beside me in a triage room. The woman saying it looked bored. My blood pressure was 193/110 and pain was nearly blinding me, and it just sounded so stupid for me to also say '10' right after her when I was obviously feeling so much worse. I once told a triage nurse 12 1/2 and she thought I was joking. You've no idea how badly I hate that 1-10 pain scale. That's why I invented the Princess Bride pain scale. If a doctor or nurse has seen the movie, they have more context, and then we can talk about me being in the 30-40 range on a decent day. Just because I'm able to function and smile doesn't mean my pain level is a 5. Actually crying driving in to appointments rates a solid 8, and from there it's minutiae to me. You know how on the earth timeline of 4 billion years humans have only existed in the last seconds before midnight? That kind of minutiae. So much pain context is crammed into those last 2 digits. I'm like if there can be 50 words for snow, I've got a hundred different phrases for particular pain levels if they're looking for context.
I can handle big loads of pain. Some days you feel like body slamming walls and trees trying to make it all shut up, other days you curl up in the dark and just keep everything really quiet. Those are rough days. Really rough days are me not caring if I break something and it's all I can do not to break windows out of sheer need to smash stuff just for distraction. I can totally see how people just lose it. Nasty days are just past that, where you if touch me, you die, and one look will wither your soul and you'll think I never loved you at all because it will be so awful. Really nasty days are hanging on in hurricane days, the kind of days where it's so bad that even breaking your legs or slicing yourself up barely ripples your attention, when even the words 'self harm' bring out maniacal laughter because it seems so tiny compared to what you're already going through. If I weren't in this amount of pain, I would totally be a self harmer. And I know several self harmers, so I'm serious saying this.
But the really worst days are the ones where it's not even that bad and your brain suddenly goes through a chemical dump, and there's not one thing on the planet you can distract yourself with that could keep you from doing something really stupid, so you reach out to hang on to other people and hope to God someone's available, because you cross that blurry line into unreal numbers territory, and you can't be sure what you're doing is really what is happening because your brain is so tired and so fried from all that overwhelming screaming you went through for days on end that nothing seems real any more when it finally quiets down a little bit.
~~~~~~~~~~~
I stopped there for awhile to get a lettuce and turkey wrap and some cheese. The prickles and itching are finally calming down. Really thought this post was going a different direction when I started it. Oh, well. I could delete all that or just let it stand. I'm sure I spoke for a lot of other people feeling frustrated with spoonie stuff, too.
I'm going to make it. I can do this. But I need a nap first. I feel like I just swept out my soul, and those crazy stacks of old EOBs will be next.
~~~~~~~~~~~~
Sometimes naps don't work at all. Since I'm breaking so far out of my ruts lately, I decided back to school means I'm getting new stuff in my house, too, so I laid there in the dark scrolling around my phone. I never do that. I so rarely shop at all, this really is breaking out big time for me. I burned out really bad after doing retail for 5 years, so I just never browse unless I really need something, like replacing a crockpot. I decided today I need new sheets. @bonenado bought the last set at least 2-3 years ago and I've never liked them. So now it's my turn to torture him, lol.
And I've been wanting one of these for years. I bet Bunny will think it's awesome.
Also looked up the tracking number yesterday on the sunglasses I ordered last month (I tweeted about them), yes, they're really coming from China. They're super cool if you want to check them out. I'm surprised how little I paid for such nice glasses, plus free shipping, so no idea how they're even making money. Well, I'm assuming they're as quality as they look on the site...
Oh, now I'm yawning. Going to go try this again.
~~~~~~~~~
Nope, just not one of those days. And then the second I get on moc, someone is getting banned for using xray, so it's a day for everybody, I guess.
Got a call to make an appointment for next week, totally forgot I was submitted last May to be a genetic candidate. I'm old enough now with enough family history to get a consult to see if I'm likely to get breast cancer. I go in next week, guess we'll see how that goes. I've been on and off alerts all over my body since my 20s, nothing ever shows up. Really don't know if I'd survive treatment very well, @bonenado already decided a few years ago if I ever test positive he's just going to take me to mayo or something. ~~~~~~~~~~~~
TODAY.
click for fun glitter graphics
Nothing special planned. Maybe I'll go pick up a couple of filet mignons and seasoned veggie grill mix and a tiny cheesecake for supper.
Got a little glum there yesterday, didn't we?
If you haven't figured out by now why I'm already a Doctor Strange fan, then you don't know me at all. It has nothing to do with Benny C because he's made tons of movies I've never seen and I don't go around watching all that just because he's in it. It also has nothing to do with Sherlock. Just for a second, imagine Stephen Hawking watching Doctor Strange. Yeah, that. Lotta people in this world gonna be latching onto this one. Continuing to use our brains to keep surviving when all else fails is what it's all about, kids, and you know I'm sharing the brain glitching part so some of you know we can still do this.
Aspienado in lifelong nerve fail. Wow, just summed my entire adult life up in 5 words.
Trip to town this morning for my annual date with another man on my anniversary. This is follow up with primary, thankfully early because they'll undoubtedly issue heat index warnings again. My head is way better now than Tuesday, so I'm adapting back to beta blocker just fine. He's not going to be happy about my blood pressure going back up a bit, but I think the thrill of me feeling like getting athletic shoes back on for some real exercise will outweigh the compulsion to hit a target number. I think once I get moving around more again I'll feel better about moving forward.
Day 5 of cutting the beta blocker dose in half, and the most immediate thing I'm noticing is that I'm not heading for the benadryl, have actually nearly stopped taking it on top of the zyrtec. I've been told for years that beta blockers are bad to spike histamine levels, well, there you go. Hope ragweed season is easier later this year.
There is a fibro condition called costochondritis that I've lived with since the car accident, so pretty much my entire adult life. It is frequently mistaken for heart attack symptoms. I can't even begin to describe like it's like living with a condition like this while withdrawing down a blood pressure med, so I'll just go with sucktastic.
One of my target areas in physical therapy this week is the nerve centers and pathways from the base of my skull down past my left shoulder blade and across the upper front of my chest. Part of my symptoms stimulating that nerve area again is Lhermitte's sign (often associated with multiple scleroris, which I still scan negative for), documented by a surgeon a few years ago who refuses to even touch me with a needle full of any kind of relief because my medical history regarding adverse reactions is so long. The 'shock' really does feel like an electrical shock, it's very painful and makes you jump, and when it runs down the left side of your chest and arm during a costochondritis flare, it plays hell with anxiety and depression. I very seriously might never know if I am truly having a heart attack sometime in my life. I have been checked so often that I loathe to even think about another 6 hours of size 6 IV needle for CT scan, chest x-ray, EKG, tons of blood work, and if I'm lucky, MRI because other vague autoimmune related symptoms that also need to clear me for blood vessel problems in my brain, and if I'm really really lucky, something as stupid as a barium enema or vag ultrasound to check off possible referred pain. I don't get pain relief until that's all over, and by then I'm so worn out that it takes a couple of days just to recover from going into the ER.
So yesterday was fun. All that cute spiky pain across my chest, me very casually and gently working through all the stuff I've learned in therapy, and I actually got it under control.
I cannot repeat that enough for anyone out there looking for fibromyalgia of the chest wall validation and help in the dark of night. ASTYM therapy over 4 years and all the muscle stretches and nerve glides I have been taught actually worked to relieve costochondritis flare and Lhertmitte's sign.
If you are suffering with this kind of stuff, get a referral into physical therapy specifically for ASTYM and get to work on that. It taking 4 dedicated years was totally worth the 20+ years I've been living with this pain. As far as I know in my own area, I am the only patient who has stuck it out this long (physical therapy can be painful and the homework exercises can suck when you live with chronic fatigue and pain), and my therapists are excited about all the progress I've been making.
I'm actually sick to death of talking about pain stuff, so let's get back to minecraft. A couple of weeks ago I was trying to tunnel to 0,0 from the -8000s on MoCreatures and getting very wealthy doing it, ran into a new area with 3 villages really close together and took time out to set up protection and preservation protocols, like lighting and fencing, installing doors and planting the gardens. Once I did that I stocked up the store real good (/warp Rivyn111), and now I'm starting over with the 0,0 thing, except now I'm just running over land. I tried using my flying horse a couple of times, but I keep getting only so far and getting distracted because I'm a total minecraft sucker for every little thing, always have to stop and investigate, so I figure it's easier just running now. Oceans, jagged mountains, big patch of sunflowers, cities made of ice. I've survived all manner of attack so far, and during the night I just home back to my island to chop wood. I miss being able to teleport to coordinates, but at least I can 'home' and then 'back' when the sun rises instead of twiddling my thumbs trying not to get killed in multiplayer.
Also ran into another little village I'm taking time out to refurbish.
Yeah, you can see by the coordinates I still haven't gotten very far yet, lol. I'll get to 0,0, but the road trip and sight seeing are part of the fun.
Keeping an eye on #SnarkStock2016 this weekend, plus today is #Belmont, so I've got a full day. I'm also sketching out a work slot that I'm very excited about to come back to through the day in between multitasking, so if I'm not responding to whatever notifications, I'm probably deep in a timewarp.
~a week later~ Finally checked voice mails and emails. No wonder more protein powder hasn't shipped, my credit card needed to be renewed. Also wrestling with old lappy this week to stay on long enough to yield more vital information. Also getting ready for the Xanga renew thing. I'm still one of the major investors, so the money transfer for all my stuff will be pretty substantial. Also have tentative internet meetings on the table.
I hate begging off, but since I caved and admitted this was a hard week, I'm going to go ahead and let you guys know THIS WAS A HARD WEEK, YO.
Ok, back to stuff. Part of real life dealing is practicing on our relationships, and aspienado is still working on the honesty without dumping, especially when it's being prompted by some kind of mood swing or anxiety attack. I keep reminding myself I'm withdrawing from a med again, I've got spiky pain levels, and it's the month in my life where I always timewarp like crazy- I CAN DO THIS. THIS IS NOT NEW. All I have to do is just hang on for a bit and let time pass. That's all I have to do. Stick to a tight little routine with my laundry and dishes, keep myself distracted with work and minecraft, keep touching base with my people, and do my stretches. Part of my stretch homework this month includes all the muscles that attach to sternum in the middle of my chest to my shoulders on the front side. The referred pain I've lived with ever since the car accident is hilarious. No matter how documented my history, I cannot walk into any clinic or ER for pain assistance without going through rigorous testing first to rule out a heart attack. I've lost count of the ECHOs and EKGs and even the holters, most of it over this fibro pain, even though I also have legitimate heart history. Fibro is a bitch.
Doing my pec work, lol. I've actually accumulated enough stretch exercise material for my entire body over the last 4 years (first therapy session was August 2012) to fill up a 2 hour workout if I did them all back to back, and that's on top of a 20-30 minute walk. I've tried it a couple of times, there's just no way. I have to alternate days. Plus I have to warm up and increase blood flow to specific areas first before I stretch, totally commanded no cold stretching. There are several ways to warm up, like hot shower, heating pad, actual repetitive movement for a few minutes, but the easiest is just throwing a sweater into a dryer and then putting on the hot sweater. I'm a cheater, lol. But not always. As hard as it is moving around because the fatigue wall and tightness and stuff, I actually like moving around.
Ok, it's 5:30 a.m., I'm dressed, second cup of coffee going, staying focused on the basics of staying functional. Might see Bunny this afternoon, that will give me a target time to have a few things done.
Just focus and survive till the time passes to a different time. We can do this.
age rating on the blog this pic links to, although that particular post is safe for work
"You look sad, when you think he can't see you." -Molly, Sherlock. But John does see, doesn't he?
Yesterday was sad, and I know it was seen. We can play our little games, but I'm tired of games. I don't hide the sad. I don't tell other people to hide the sad. But someone is sad, and I am still sad, and I don't see a resolution as long as someone has to keep pretending that everything is ok. I feel angry when other people pretend. I grew up angry watching my mother pretend. She never got the help she needed because she was always so busy pretending she was ok. It's hard watching people you care about do that. They're there for other people, but they don't allow other people to be there for them. Unless it's a head game. But I guess it's not my stuff any more, is it? I guess this is where I finally really just get off that road. Being friends with me was obviously a mistake. All I can think right now is if you only knew what you're really missing now, because all the things I said were true, but I guess that wasn't enough.
clicks to source on facebook
You guys know all you see is the surface, right. You only see what Pinky lets you see. You guys didn't see this. "I was thrilled thinking I might not have to do all my hard work alone, that maybe someone would be around with me surging into awesome. I have a vision, a dream, and I'll be going there. No more stalling, it's TIME now. This is the year, this is my opportunity to shine, I've been preparing for this for ~years~, and there is absolutely nothing that is going to stop me from doing everything I can to get as much work done as possible this year, barring actual death." But you guys did see me stall out for the first time since 2012. THAT is how much losing a friend affects me. And now, if I really want to get back on track, I've very seriously got to let this go now. I went underground and leveled back up, and I've got people waiting on me to turn away and go with them now.
click for gif
I've switched all my blogger blogs to https now. I Lexxperimented and discovered my Lexxperience.com and PinkyGuerrero.com domain pointers have no problem sending traffic straight to the encrypted versions, yay! I was conflicted over whether to give those up, but now I'm going to keep them.
Also, I was contacted privately this month by someone who thought I was other Pinky on allwomenstalk, and I was nice enough to dig up the link back to her myself and say Sorry, I'm not the Pinky Robot you were looking for. Ok, I didn't say it like that, lol. Anyway, of all the Pinky Guerreros out there, I seem to be the most aggressive with my web presence, and I feel like I need to be teaching a class to the other Pinkys on how to properly link and hub all their medias, because as you can see, other Pinky didn't. Several of her hub sites are very poorly linked, and this one isn't actually even hubbed, so...
Ok, back to physical therapy today. I'm doing once a week for 2 months this time. I was supposed to be doing homework this week, but I slacked because extra Bunny time and extra chilly out this week. Also because it set off charley horses in the long muscles up both sides of my spine (my tenderloins, lol), and if you've never had a charley horse in one of those muscles, you basically twist into pretzels trying to work it out, and if you're lucky, it won't trigger spasms around your ribcage and make you feel like you can't breathe, and if you're really lucky, it won't trigger a nerve center beneath either one of your scapulas and make you feel like you're having a heart attack. It's loads of fun disentangling fibro in ER, 4-6 hours of tests and scans and when it's all over you finally get a pain shot and a doctor going Huh, is that all. And by the time I finally get the shot I cry like a baby because laying on those stupid beds so long with a charley horse in your back sucks super bad, and anything coming through a needle is a godsend. So no, I didn't trigger that this week during chilly weather and lots of Bunny time. I need to buy a bigger heating pad and do warm ups before and then heat after so I can control that whole triggering mess, so a heating pad is on today's list.
Fibromyalgia is a nice word for charley horses from hell, and we're talking everything from tiny strings of muscle turning into diamond filament tether fishing line (I have muscle fibers in my hands that feel like guitar strings, they don't even feel like human tissue) to synchronized ballet as entire sections of body seize up.
And that's the kind of morning we're going to have. I just got stuck in the Futurama wiki because of the fishing line link up there. Click this if you need to get lost.
We've got a fine herd of cave crickets up and coming. @bonenado has been putting tape down in the basement and trapping 50 at a time since they were cute little wee things, now they're big and fat and still catching 50 at a time. He's thrown hundreds of them away. And now they're filtering up to this level and surprising me in the laundry, which is hard to do because I'm so fastidious with laundry. Got two this morning in the kitchen, casually asking where the coffee is. I have no idea what those things are eating, but they are fat. If they're famished enough to wipe out something like a possible termite population, yay! I can't even imagine. Maybe this is why we're not seeing any spiders...
This coolness arrived in the mail. Click it to go to amazon. In case you're not familiar with your physicists, Carroll has been hot on the heels of Kaku for years and is now being hailed as one of the greatest human thinkers of this generation. Future scifi rests on this man's shoulders.
I spent yesterday jumping up to clean every time my router got blinky, which was basically every 5 minutes (remember, our electric had been out the night before) (yes, I reset the router 3 times, it was blinky because our electric was still blinky), so the laundry is caught up, bathrooms are clean, dishes all done, bedding washed, plus I got a lot of little chores done in minecraft working in the nightclub. It's a blend of Goldmember's Studio 69 skating rink and Casanova Frankenstein's disco room.
Might take awhile to get enough gold to make the walls gold... Or I could go purpley-blue like in Mystery Men. I'm experimenting with a disco ball, actually strobe lights for the time being, not crazy about anything I've tried so far. I still need to make a 2nd tier observation balcony around the wall, will try to strobe that but I don't think the railings will cooperate. For now it's all lit up so I can see to work, but eventually I hope it's dark enough to spawn mobs, lol. Except hopefully we don't wreck the place up killing them. It'll be awesome and just an all around bad scene, like a real underground club.
This wins tweet of the week for me.
I have have half an hour before I have to get all over a very long morning out and then come home and crash through a rough afternoon. In case you need to get lost again, here's a good place to start wandering around.
And in case you really do need an exit cue, like me, here you go.
this looks like bluejacky's kind of place
click the pic for a review
I finally watched an Agents of S.H.I.E.L.D. with @bonenado a couple nights ago and had an interesting convo at the end with him about not sharing fan feels, highlighted by holding the remote hostage and flipping a bird in his face. What triggered it was a micro second computer screen view of a torus immediately covered up with other graphics blipping through, and *bing* right back to the character faces. I got as much understanding out of that entire series in one micro burst of graphics lasting less than two seconds as @bonenado got plodding his way through weeks of episodes. A quick five minutes of high speed interrogation caught me up. The most exciting thing about that five minute convo? Aside from finally seeing nearly up to date actual SCIENCE THEORY on a scifi show (soooo tired of characters re-explaining 120 year old Einstein stuff, omg), Scott and I had a quasi-intelligent interchange about theory instead of characters.
Brain sex.
I like it hard and fast. That was a very satisfying five minutes. I think he felt a little used and abused, but I like a flush of color when I'm braining. (I'm making up for the bird flip with homemade apple pie today.)
If you wanna grab that pic up there for a wallpaper, go here, right click on the pic, then save. It comes in full size that way. If you go to the article first, it comes in tiny.
One of the reasons I don't keep up with ALL THE SHOWS out there is because they wind up dragging through so much character development that the really cool stuff, like *ideas*, kind of gets lost in all the yap and moodiness. I was glued to this ep because blue planet. They really did a fantastic edit on that, and I wasn't bored at all. I enjoyed every detail that went into creating that episode.
I'm a Ray Bradbury fan. The up and comers don't know who that is and how utterly inspiring he was. The blue planet episode reminded me of the way I felt reading his science fiction stories when I was a kid, awe-stricken with visuals.
So. Today. *ow*
This is from Graston technique- Soft tissue therapy breaks up scar tissue and adhesions. "This is the Graston technique, an instrument-assisted soft tissue therapy that breaks up scar tissue and adhesions around muscles, tendons and ligaments. Stiff, bumpy scars and adhesions, Liebowitz said, don’t expand and contract the way healthy tissue does, limiting movement and creating pain." One of the better articles I've found describing how microshredding fascia works to bring pain levels down.
You guys know I'm back in physical therapy pursuing the bounce off or bust it down wall thing. My therapist has already tried 3 different approaches in 2 weeks and I'm wildly rebounding off that wall left and right like a trampoline. She's getting incredible notes, though. On top of my basic chart full of typical severe fibro, now I'm getting words about just how bad in very specific locations. We are defining the wall. Kinda like getting sonogram of an ocean floor or something, takes time.
I'm at the point in therapy where I might not be able to keep breaking through, and really do need to submit to a stopping point before we trigger massive casualties. The goal of therapy is to bring pain levels down, but thanks to my insistence on aggressive experimentation, the pain levels have been spiking left and right, right? Part of mapping my wall is testing all the boundaries. After 3 visits, I think my therapist is deciding to sit on me until I stop struggling and start cooperating. The whole power through the pain thing isn't flying with her at all because she can see me actually making it worse.
She grew up on a farm, like me, and has really super strong hands. Boy howdy, I am getting deep tissue restructure like you wouldn't believe. (That doesn't sound awkward at all...) This is actually what she's doing. What Is Astym® Treatment?"Scarring can happen on top of the skin, but often the biggest problems come from scar tissue that forms inside the body around joints, muscles, tendons and/or ligaments. The body naturally lays down some scar tissue in response to irritation or injury. The fibrous, strong scar tissue is meant to reinforce an area, but often it ends up restricting movement and causing pain." It's a really good article, if you're interested. I'm basically a solid mass of scar tissue, and as we slowly shred, it's turning into what feels like tight guitar strings, and those eventually tear down into softer and softer tissue. It's kind of a shock doing too much all at once, the body has to deal with so much cleanup and rebuild. Some people bruise up all over, but even though I'm not an easy bruiser, it's still tissue shred and revamp and must be treated like any injury- HYDRATION, rest, protein, and proper stretching during healing, because if you don't do all that, you just wind up with more scar tissue instead of healthy fascia.
I know some of you think that's crazy, hurt to heal. I'll tell you something even crazier. I worked with a girl one year who was going through modeling school before she went to college, and on the advice of the school, went to a special surgeon to have her jaw broken and set to length specification, and guys, she was already stunning. I can't even imagine paying someone to break the hardest bone in my body in two or more places hoping it will make me more beautiful. I think of her every time I go through ASTYM. If she can go through her jaw being broken for a career, I can go through a little bit of tissue shredding to drop a pain level and regain some mobility.
ASTYM itself works really well on me, I just want to keep pushing through to get closer to 'normal' again, which probably won't happen. My body response is driven by the fibro dysfunction mechanism, and I'm starting to wonder if the aggressive scarring throughout the soft tissues all over my body will be a continuous thing to my last day. My mom pretty much just 'froze up' all over, and you can call it what you will through the stages, like nerve entrapment and whatevs, but in the end, muscles that can't move can literally calcify (I saw her shoulder x-rays), and the only way to keep it at bay is to keep moving.
Anyway, just touching base on the major suckage issues, yes, I'm in a buttload of pain last couple of weeks, but it's the good kind of pain, not the bad kind. All the same, it affects my personality, and I'm chewing on a bazooka like a toothpick. If I'm not talking to you on the twitters, it's probably a good thing.
Oh, let's see, need a productive jam to keep me moving. I cannot believe that scene with Oswald's mother. (I won't spoil it if you're behind.) Let's get some Oswald support going while I GET TO WORK! >=lFOCUS!!!
@bonenado is mildly fussing this morning about his backup floating around in a carbonite cloud that doesn't recognize him having an account since the phone switch. I've never trusted any phone company's backup reassurances to the cloud. Phone accounts are still way too solvent for that kind of eternal storage.
It's like the memory catacombs in Super Nova- who's going to ever go through all that? Humans could go extinct from a nuclear winter and as long as there is some kind of power getting to servers, all our memories will float in a vague cloud no one else knows how to access. We are in the packrat stage of our evolution. We think everything we think is precious and must be hung onto for posterity.
Meanwhile, getting warm fuzzies seeing someone bouncing around from a Lexx forum to my Lexx blog on a work computer, because it's only one state over from me and I so rarely see Lexx fan activity in the heartland. It's usually coastal, Canada, Euro, and a big nod to anything and everything remotely associated with Russia because over here we're terrible and lump all your political carnage and abusery together. I know some of you are caught in some very real situations. Ditto on the 'anything and everything remotely associated with' for Asia and Arabs, too, and a final nod to South America, I know you guys are still invisible to most North Americans while you take over food production and tech development for the entire planet. I think we're afraid of you guys because cartels run your soccer leagues and shoot players who don't score and half of you run around without pants on doing crazy sex things. I'm sure it's just a misunderstanding on our part.
Anyway, yeah, Lexx in the heartland. I'm not alone.
I did a little brush up research yesterday on fibro flare. My biggest challenge in PT is learning to hold back. I clearly overwork, nothing like having to be trained to go slow and easy. I worked like a dog through my entire childhood because that's what Mennonites DO, and it's just really hard for me to slow down when I feel good enough to GO. So I'm having a great year, I get back in PT, I push the upper core and then lock into position in a dentist chair for a checkup, push more upper core next morning, and blow up into super defcon all weekend, omg. I was doing deep tissue massage until I bruised myself, unconsciously stretching almost nonstop trying to get away from the pain spiking up from my shoulder blade through all the nerves around my skull, heat felt great but didn't do a thing, and finally my right shoulder and neck froze into a solid mass of hard rock. When it got to the point where I couldn't even move my eyes without spiky pain, I finally caved and reviewed the dealing with flare stuff, and the word REST got into my head, and I was like Oh, yeah... Funny how I miss that sometimes. You'd think it would be counter intuitive to hold still during a fibro flare, but it worked.
A few years ago I did this and a doctor I saw was absolutely convinced I had sprained my neck. If you've sprained an ankle, imagine that in your neck and shoulder. So me and Romo both go down on the same weekend, and I'm basically doing the same thing he is- holding still. Don't move the arm. Keep my elbow tucked down at my side. No lifting, no reaching, no holding anything. REST. And that is actually working. My pain level is way down this morning. I think I'm going to cut out upper core the rest of the week, just stick to lower core and my walking schedule. Poor Romo fans, huh? HAHAHAHAHAHA Suck it, guys. Of course, I can't mock too quickly, I'm losing big time to @bonenado this week after losing by only one point to Mandie last week. Cameron and his groin again :roll eyes:, and I really doubt Ivory will pull 30 points for me tonight.
All this techno mumbo jumbo, most of you reading this probably hate football, don't even know what Lexx is, or care about stats for either one. One of you in the back is waving and cupping hands around mouth trying to yell "And we're sick of Sherlock too" and I'm going WHAT I CAN'T HEAR YOU.
It's Monday, I need some awesome. You guys have a good day while I go bounce around with coffee in me.
Fun with fibro- when one of your sternocleidomastoid muscles charlie horses for a week from doing so much extra computer work during a ten-day hypomania writing surge and makes it feel like someone is squeezing your external carotid artery.
One of many reasons I don't blog a lot about being a spoonie is because so many people seem to relish describing their sufferings in lengthy minute detail that I see no need to add to that plethora of information. I simply just find this particular nuisance kind of funny and wondered what the muscle name was because I all but flunked anatomy and 'fizz' in nursing school years ago. Don't worry, I was acing everything else, but the migraines got pretty nasty that year and I wound up dropping one semester away from my certification.
SO. Turns out we're not sending ANY of the Sherlock back. Scott ordered the special limited edition blu ray gift set that comes with bonus disc, art cards, collectible Sherlock and John mini-busts, PLUS all the extras from the previous editions. I'll still keep the separate season DVDs I ordered because I got them so cheap.
And that wily @bonenado also snuck a newly released Doctor Who collectible lunchbox into the order, so yesterday was like Christmas, just right out of the blue.
You noticed, huh? That's right, I'm not sleeping. I was up before 2 a.m. again.
I can't help thinking thank God I tried again. I can't even imagine where I'd be right now if I hadn't. I can't help being grateful for how hard someone tries with me, and no one has ever tried harder than this time to keep hold of me. I'm learning, but aspie's so exasperatingly aspie.
