tip-toeing around regret or something

*weeks rip past me at the speed of Barry Allen*

Srsly, I try not to die a  little inside every time I miss TWD and Flash live tweets now.

Ok, so I wasn't really done with my thought organizing in the last post, due to time constraints, but let's jump back into that, shall we?

• I have finally titled a piece I'm working on about *entire brain stifles fingers and mouth*
• Still 6 pounds down from August. I'm hungry. Oh, yeah, I haven't had nachos in a week. I know everyone in the Force just felt my starvation pain. Thank you. I felt you feel that.
• Cut my coffee in half again this week. Officially down to exactly one measured cup. My big mugs look half empty now. The withdrawal headache is easing up a bit.
• The size 7-8 slippers I finally caved to picking up from Walmart this week feel like size 6. The disappointment is real. The saddest part is me having the smallest feet, so I can't gift them to anyone.
• Now that I've managed to establish a somewhat firm fuzzy boundary around my bedroom (extremely fuzzy), my entire brain of cells is chanting TAKEBACKTHEHOUSE TAKEBACKTHEHOUSE TAKEBACKTHEHOUSE and I'm doing my best to plug my ears and go lalalalala.

I met a woman in therapy today who has nearly 20 years on me. She was there after reconstruction on thumb because arthritis ate up a bone in her wrist. Even with the usual 'growing old' rhetoric, which I heartily agree with, the context was still so lopsided that I was glad when she had to leave so our convo could be over. I'm still having difficulty empathizing with people way older than me who have less difficulty than I do and think something is so hard when clearly they've been enjoying more capability far longer than I ever dreamed, although yes, a thumb reconstruction sounds horrid. (She was literally able to do way more than I was with the exercise putty, and I'm 7 weeks out from carpal tunnel release, so clearly something is still wrong with my hand.) It's not so much feeling self pity as ok, I already dealt with that, is there anything more interesting to talk about kind of thing. I mean, so many other drops and mentions about a real life, I wouldn't have minded hearing about what she assumed was boring, right. When I'm with a therapist, I generally try to talk about something we both find interesting since they must hear pain junk every single day and they're probably sick of it, I know I am, and I'm not there to find new friends to whine about the cold snap with. She suddenly blurted all the interesting stuff as she was walking out and I felt so gypped. Really? You just leave me dangling full of questions now...

I looked up scleroderma, since my therapist thinks I have it. I have follow up with primary the day before my birthday. I'll likely get a flu shot and now possibly donate blood to see how much worse my life might have been all this time behind my back. Meh. It could certainly explain a few things, but I'm already beyond my personal life expectancy, so it's not really bothering me, aside from it also explaining a lot of how my mom went down. One of my sisters has sjogrens, the other has I think 3 kinds of arthritis all over her body, and other things abound as well, so I'm just not terribly surprised. What did you get for your birthday? Scleroderma. Oh, sounds nice. I am really appreciating the wicked sense of humor a friend of mine on my street had before she moved away, and I'm missing it lately. It didn't matter how badly something sucked, she lived her life the way she wanted and always presented as having it all together, and that humor was a sort of mockery I didn't understand back then. Totally getting it now.

I'm the sort that pulls back into a corner making sure other people are doing ok first. That's a tough challenge, especially since I'm not at all mousy about how I feel. I shut up because I love them. Well, poor @bonenado hears it, and I do regret that more often than not, but I have so many memories of what I thought of people around me as a kid, and I know how ugly grown ups can be even when they think they are being kind. I'd like to think I'm living up to this life challenge, being a natural narcissist and definitely being territorial in a matriarchal way, meaning that my challenge is about learning to be sweet. It's hard. I wasn't born sweet.

But yeah, I'm all swimming around in a head full of where are we now kind of month because here comes my birthday, and *bam*, Google pulls the G+ rug out from under me, and inside a very dark room I don't generally share even with my psychologist, the swears I can hear inside are making even me cringe.

Our world revolves around the whims of the uber wealthy, you know that right. I should have gotten slippers from my local sheepskin guy. I should have stayed my course instead of following people on wayward ventures over the many years, and there have been several. I should have branded by now. I should be merchandising already. *quietly rests head on table because banging my head on a wall would only make it worse...*

My birthday number is fascinating me this year. I mentioned becoming this age in my #Pinkyblog post pink is the new dark, or, my life without any meth whatsoever.

Kinda got lost in this. Cue the video!

raw

Ah, here it comes, the after surgery fibro flare. I was wondering when it would really hit. I thought yesterday was just overdoing, but I guess I'm done for a few days. The only thing I would add to those personal descriptions in that link is my entire nervous system feeling raw, exposed, possibly even a little sizzled on a grill or something. If you've ever had Fifth Disease or Hand-Foot-Mouth, the nerve part is like that only all over and worse.

I'm actually in really good shape at 16 days out from knee arthroscopy and carpal release surgeries. As the flare hit, though, actual capability was overcome by intense throbbiness around the still healing areas, and even though that doesn't mean my healing has slowed down at all, it does mean what I could easily do a couple of days ago is being drowned out in overall perception problems my brain is suddenly backlogged in, like pain sludge.

My mood is good and I'm actually sleeping a lot and eating normally, so I'm not worried. Just need to let my brain sort it all out I guess. I've heard that the backlash after all the drugs during surgery can be a nightmare, so I feel blessed that I'm basically sleeping this one off. Sorry so long getting back in touch with some of you I'm working with on stuff.  I'll get there. ❤

it's all a lie

Worst day ever. I hate everyone, I'm dropping everything I touch, everything sucks. At least I got a shower without incident, but it took full concentrated focus.

~~~~~~~~

Later.

Even tiny doses of opioids make me mean when they wear off. I did 3 half pills spread out yesterday, just enough to get thru the hard parts, and today I was everything evil until I finally took another half.

Now my world is soft and warm and everything looks like a magazine life, and I know now it was the drug and not me. I love again. I'm at peace again.

I clearly cannot do this to my family. Next dose will have to be a quarter. I've got to dose down as quickly as I possibly can and still keep just enough warm fuzzy to get thru the hardest parts.

One of the red flags is how wasted I feel on so little. I used to live on handfuls of pills around the clock for years before research finally caught up with experience and agreed that just doesn't work.

The worst part of any pain syndrome is the addiction/withdrawal cycles. The hardest part of living spoonie is the crippling depression and self loathing that comes with watching myself be mean to people I love.

More incentive to get healthier.

And along the way I figured out how to solve my FB problem. You know how you can custom share? They suggest making custom share groups like for family, friends, close friends, etc. I tried making common interest groups for awhile. Nothing really works without some level of frustration. I decided today that's the wrong approach. If some of my people are topic, issue, or content sensitive, I can make custom share lists based on things like fun, thinky, mood, nerdy, etc. I think taking an extra step or two will make me easier to take for some. I mean, I handle people that way in real life, right?

Ouch.

not to 1055

click for more dog memes

One of those medical assessment posts for my glitchy memory.

Established with cardiology yesterday. I had a cardiologist a couple years before and after my radio ablation for SVT back in 2000, but insurance changes flipped me to another network, and I'm just now establishing again after the May hospitalization for uncontrollable blood pressure breakout. I am fabulous right now, so I don't have to go back until next year, but at least now I have direct call waiting and email to specialist if I need one. I think my primary is relieved.

Ramping slowly back up to 300mg 3x a day on the gabapentin per neurologist, again. This is the third time I'm trying. First time (winter 2017) went up too fast and turned into lethargic zombie. Second time (May 2018) coincided with amlodipine and got significant leg swelling, plus the amlodipine wrecked my diabetes. This time it's slow and the only med being changed. So far I'm sleeping better and getting up easier, no weight gain or fluid retention that I can tell. Being commanded to watch blood pressure after stopping amlodipine, have been able to solidly correlate pain level to blood pressure since I also ramped down the gabapentin and now ramping back up. It's one thing to say pain causes high blood pressure, it's another to actually see it on paper. Clearly I need to stay on pain management, now that I'm below the 140/90 target again. I'm still on toprol, of course, but my pain levels easily override control when I try to tough things out and power through, like I was brought up to do through my childhood. Looking back, I can see that powering through probably set me back through much of my adult life, as I gritted my teeth and held on through college and jobs and trying to be a good parent for kids in school. The band president year was pretty rough. I loved it, though, and I don't regret it. Stuff like that. But yeah, I fought hard to stay as normal as possible in between month or year long stretches of complete disability and severe immobility.

Also, the stenosis in my neck is bad enough now that even slightly turning my head either direction sends shooting pains down shoulders (so fun in traffic!), and if there is really less wiggle room in there, maybe it's time to move past chiropractor. It was a lifesaver over the last decade as I was going through core strength in physical therapy, but all that is stabilized now and I rarely need adjustments any more. I knew this would be part of Plan C, moving on to the meds.

Can Neck Manipulation Relieve Spinal Stenosis?

I'll still need ASTYM maintenance or I'll freeze up solid, but you can't ASTYM a nerve trunk, lol. The thought made me giggle. There's a special kind of humor in pain lifestyle.

There is also irony, like slamming through a week long tweetfest one week before carpal tunnel surgery. 😂 I have really been enjoying #SharknadoWeek on Syfy, but barely able to hang onto anything because of it, like flipping a spoonful of yogurt on my good blouse, casually tossing my phone into a wet sink, I won't even bring up keys. Too late. But yeah, it's crucial to always close the toilet around a person like me in the house. Anything could go anywhere at any time if my hands even pretend to touch something. You'd laugh if you could see how klutzy I am trying to moderate on a game server. Just trying to type a short command under pressure is hilarious when the player has one of those long names spelled weird with caps and dashes and extra x's sprinkled around.

Let's see, what else. Allergies are so bad right now that I've tripled my zyrtec and benadryl, ears feel like I'm underwater or flying 20K feet, throat is on fire and sore to swallow. I'm mostly fine inside my house. We have 3 hepas now and I'm so stringent on laundry coming in that most of it stops at the door, but even just driving into town in a climate controlled car with air filters has me swimming in snot. I was chunking more antihistamines in traffic yesterday only 15 minutes from my house. Between all the mowing and the rains and wind now in a high humidity region, I am breathing particulate soup everywhere I go.

Is this boring? I feel boring. No one ever talks about the conspiracy scenes in Sherlock. Oh, yeah, the fan theories, but you know, like the background scenes and stuff... Here, lemme distract you from that before you actually think or something.

The Cases Are Fake: A Theory That Totally Changes Sherlock

Except that all falls apart in season four, when we find out it wasn't Mycroft...

Ok, I'll give you a nibble. Like the clock scene when Moriarty is giving the raspberry in the air sending a text off to Mycroft. The time is 10:55. Check this out, from What are police codes? What is the meaning of the police code 1055?

10–55 means “dead person” or “coroners case.” This would be the ten code used on a police radio when an officer arrives on the scene and finds something dead. Although the code is meant to describe dead people it is often used to describe other dead things like a dead car battery, a dead radio, or dead animal.

Yeah, I know that's a stretch because that's a U.S. code, but still fun to think about. I could make a whole list, though. I still say the filming was brilliant, whether it was purposeful or not.

And because I free associate right off the page, I wound up here

The Kiss of Judice: The Constitution Betrayed - A Coroner's Inquest and Report, Vol.1

Great, now I need another video so I can escape.

life imitating art imitiating life

click for fun romp thru 'chronic illness demotivational posters'

Those crack me up, lol.

So I finally made it through the rest of the Patrick Melrose miniseries, by the last ep they stopped being so subtle about the idea that the elite of the world are dying out and their children are done with their head games as they have their own children and realize how awful the generation above them are. I've been going through the same revelations myself through my own years. I think they did a really good job with the show.

@bonenado is home with me this week because scary big stuffs, so we're off and on hitting the DVR in between other things. Slammed through the last of the 12 Monkeys, and I've decided I'm going to buy that series and slam marathon the entire series over again sometime. I don't waste my money on entertainment, so that's a big deal. I really don't have the time to sit and watch TV, so I'm barely keeping up, but HUMANS and The 100 are caught up.

The more actual medical documentation I find on Rocky Mountain Spotted Fever, the more thankful I  am for the weird synchronicities in my life that led to me even bringing it up with a doctor, because one sentence not being said at the right moment could have changed this path entirely. One particular info document to doctors mentions that expected mortality for untreated RMSF can be as early as 8 days, and people can take months and years to recover from the rapid damage even on antibiotic. That 5 day window is critical to staying ahead of the level of damage that causes 'neurologic changes' among a long list of other very nasty things. I have purposely pulled back just in case something spirals out of control and I don't have any more time to deal with explanations, contacted key people about current activity changes, and now this is here for everyone else. I've been in low grade fever all week, started having the headaches yesterday (brain inflammation is a huge risk with my autoimmune history), and still having difficulty walking on the affected leg with the swollen knee. The fatigue is unreal.

As far as we can tell, onset was around June 11th, BUT IF the sudden blood pressure surge 2 weeks before was part of it, I could be about a month in, and that would mean the critical antibiotic window was missed. The doxycycline *will kill* the RMSF germ, yes, but I could already have damage that could still become life threatening, or at the very least, make the summer feel much longer and more arduous than my normal spoonie summer with allergies and temp changes from AC and heat. I was already living with nerve dysfunctions and arthritis, and both the RMSF and doxy can kick off an autoimmune flare at any time, if I'm not already in one. Treating could get tricky. Best I can do is rest rest rest.

Still on the game server every day. Sorry if I'm slow to see private messages coming in. I know I had a lot more to do online, and I still have plans galore I want to get to, but it's important right now to keep my positivity focused for better healing. In the old days I crawled through coding and tweaks on bad days. I may be getting back into that, and THAT, basically, is what built my web presence in the first place.

Myke, Barry, Sam, Riv, Sploit, Vicki, Lisa Marie, Holly, #Snarkalecs, Matt, Aaron and Mel, Dylan and Dawn, all the Scotts, Mike B and his bois including the boss, movie gang (my rock), moc, fandom friends, everyone who lurks me and I know you're there watching my blunders and boofs and picking back up again- I love you. If I go through another brain crash and it's a slow climb again, I'm putting this here so I'll remember Pinky Robot euphorias started with you guys showing #aspienado how to hang out without blowing up the webs.

I might be in for some deja vu here in a bit, lol

I've lately had the luxury of doing some comparison thinking, experimenting with projecting possibilities on my own brain and trying reactions on for size.

For example, after the things I've already lived through, the traumas and illnesses that have taken me down into shards that I've spent years cobbling back together, what would be more shocking to find out I must live through next, and whether there is a comparison at all between something like rocky mountain spotted fever vs something like cancer in any of its various stages.

I'm lucky. I accidentally discovered a tick, accidentally wound up at a doctor follow up for something else within a decent range of finding that tick, and quite accidentally wound up on immediate treatment for something I wouldn't have suspected in the slightest even though I was obviously being affected.

And then to find out up to 70% death rate before this particular antibiotic was invented, and in the short time up to morbidity, a very miserable slide into the depths of hell that include inflammation in the brain, along with capillary fail all over the body and particularly lungs and other organs being damaged along the way.

People finding out they are in the first stages of cancer would live longer than I would without treatment.

Given my health and genetic history and my age, I'm lucky I'm alive right now as it is. So far I'm not terribly sick, no. So far I'm not suffering horribly like I could be without treatment. I'm very blessed and very lucky. But this is nothing to blow off like it's a piece of cake. Yes, I'll be fine, but, as with any length of cold or flu, yes, I will be a bit worn out and apprehensive, and I think I deserve that appreciation of circumstance. I've been very thankful for the handful of people who have actually understood the weight of this new challenge. There is no cheating on this life test.

Several long time agos, a friend here or there fussed about not being told something after finding out, like their feelings were hurt not to be on some kind of contact list about something important. If I contact someone personally about something scary and feel blown off, I don't waste my time on my feelings over that. I simply pare down the list. Apart from that, all my stuff is public, and anyone can check on me at any time. I understand that all our plates are full and sometimes we can't deal. It's ok.

If you're checking in to see how I'm doing, though, thank you, I've been having chills for about 24 hours along with the usual pain of aching all over that comes with any germ warfare. My knee is bendier and easier to walk on now, but still a bit gooshy with fluid near the tick bite. MRI today will let my doctor know whether any real damage has been done. My understanding is that doxy, while an excellent treatment, can't work miracles against some of the damage that can happen very quickly. That I have to do on my own over time as I heal.

I keep asking why we chose this planet, it's so toxic out there... lol. Guess it's really pretty, though. Hope you guys are having a great week. 💖

what one little dot can do

click for wiki

Positive on the first part of the tick panel coming in. I've been on doxy for 3 days and got enough immediate relief the first 24 hours that I was able to start bending my knee again, and today was able to get out again and walk around Walmart. Feeling super drained now, though, and yesterday it felt really good to blow the day off and not really do much but play on game. Can only guess at how bad this would have gotten if I hadn't been seeing my doctor for follow up on something else. I got lucky, because I wouldn't have gone in as quickly otherwise. My knee had been swelling and my leg going rigid for at least a week before I got on antibiotic. Looks like it can be pretty serious.

This is my second tick disease. I'm a Lymie from way back, and back then I was untreated. I'm almost in a disbelief state, just cruisin on spaceout spaz. I mean, what are the odds? I so rarely go outside, and this was the first and only teeny weeny tick I even found on me. I never even thought of a bite being by a swollen knee being the cause. And now I'm running into articles about people winding up with amputations and worse. Eek.

As you can imagine, my incoming work pile is on hold. My brain is already gone for the day, and I feel like I have a virus draining me. I just wanna curl up and sleep, and I just might as soon as @bonenado gets back and takes over Bunny sitting.

In the meantime, Bubble Guppies.

:edit: Adding my fave Bupple Guppy song.