Part of the big lead up to surgery is covering all the bases so there won't be any medical mistakes or accidents. I'd love to go into it blissfully ignorant and trust that things will all work out fine, but of course I have just enough experience to know how those stats really work and not quite enough access to my own records (notes of interest) and medical knowledge (search engines and acing medical terminology and nursing school go only so far) to wring any confidence into my head. I'm extremely grateful I got such a good critical care nurse calling me for preregistration or I'd probably have backed out by now. I could tell that person had seen it all and knew every detail mattered for every possible fail rescue.
The propofol from a test last week screwed my brain rhythm, so I've been shunting through extreme depression and worse mood swings. Can't wait for general anesthesia to add to that. Plus the preregistration questions about chest pain and family history of everything cardiac and brain fail prompted responses as me being already there with the pain/fail stuff since spoonie nerve probs, pretty much whatever statistical outcome for more serious chest pain and brain fail during recovery might not even be noticed. I live with fibro of the chest wall and on meds to help control Lhermitte's sign level pain, so just saying 'chest pain' is pretty complicated. I won't even go into the brain part again.
And of course I'll be asking a nurse tomorrow to get a note to the surgeon to please consider a different pain med than he's used to scripting and then having to deal with protracted withdrawal all over again on top of recovery. While my support system at home keeps zooming around full blast over-planning, the main question is how quickly will I be able to be left alone again. Um... I just asked my husband to make sure I don't do anything stupid and not to assume I'm ok. I'm pretty sure my depression will be more severe for a few days with my brain coils all tangled up again.
I'm very much looking forward to this particular pain being over after surgery/recovery. I'm also very much looking forward to holidays. But I've already been through the kind of fail that kept me from driving for 4 months or being able to read or watch TV for a couple of years. I sincerely hope I'll be touching base as usual as soon as possible, but it may or may not be a few days. I don't know yet.
I don't have any contingency plans in place, so if I'm one of those weird statistical fails, oh well. The only things I've done for real are getting laundry and dishes caught up and the bathrooms cleaned, and untrusting everyone on my game server claims. Don't want to come back to my stuff pillaged if I can't log on for a week or something. j/k #clanfam Hopefully, though, I can log on and play through recovery for distraction.
Apologies for my rough week. A few people got caught in a bit of brain flux.
Making myself sit down and take a break. The surgeon pushed a magic button yesterday when I went in for consult and musta gooshed a little stone loose or something, because the pain level is dissipating and my energy level is coming back up. I'm cured! 😂 lol Seriously, though, I'm a long way from cured, so I need to not be stupid. Caught myself zipping around and up and down the stairs doing #allthethings, and @bonenado commanded me to SHTAP. He knows me well.
So this month has been rearranged, got the Bunny stuff onto a better track so I can stop, drop, and roll with whatever comes next. Mostly waiting on phone calls arranging new meetups right now. So far I will be scheduling two different procedures, the second is an actual surgery, the first could turn into a separate one if they find anything, and there is mention of something else completely unrelated down the road. When I hold back the dam, I HOLD BACK THE DAM. Well, the dam is busting, and now we're slamming through finding all the holes because I'm such a stubborn idjit that I'm sorely tempting a Darwin Award. I'm the one always saying we live in the golden age of information, and here I am leading the way off a cliff, wheeee. #goodone
That other thing still not yet in the queue doesn't necessarily cause any pain and can be very sneaky, so maybe I'm fortunate other stuff is blowing up so we're accidentally seeing that, too. Managing Incidental Findings on Abdominal and Pelvic CT and MRI
Whole list of articles there. This is probably a common thing because people are so bad to put off actually getting real tests done.
Anyway, I'm actually feeling a little better today, which is sweet since the last couple of weeks have been pretty miserable, so I'm organizing some thoughts for a very laid back holiday season this year. Turkey Day will be simple on my end. I love Macy's parade, I'll probably be logged into Mo Creatures minecraft server hanging out, and I'll have a few nibblies around because that is just second nature. I've been cooking since I was 7 and I've cooked professionally, so as long as other people do the heavy lifting and follow instructions, it'll be delicious. (Barring complications complicating things up, of course.) And after that, I'm usually the one at home texting with Black Friday shoppers, so I'll be chill anyway. I've done the frenzy, it's fun to a point (especially on the retail and service industry side, I've worked through at least 8 Black Fridays or more in some capacity, 5 years of it retail), but it's also cool being the chill one sitting back laughing, so all good here.
And then after that, with December always being the crazy part of the year when schools and work places are doing parades and games and parties and stuff, I will still be chill and keep the ball rolling smoothly in the background. I'm really good at that, it's my comfort zone, and hopefully I will continue to heal and get even healthier while festivities roll around me. I'm already enjoying all the pretty colors coming out everywhere.
But yeah, @bonenado was right, sitting here I'm starting to feel it again, so I was pushing it. Bad me! I'm not good for anyone if I'm stupid. Stop that! Time to chill. I've had this list for awhile, but I just added it to my playlist page.
That reminds me, I'm so far behind in real life, I'm making a nonlisted playlist to catch up on the latest SNews, sticking it here so I'll see it and come back to it when I have free moments.
And if I get some rest today, I might be able to stay up for #latenightmovie with @LNMGang again tonight. 🍿
Getting up the morning after the night after the morning after the day before like... +_=
And apparently I was my cool self and told everyone around me I loved them.
I think @bonenado would like it if I had a happy gas tank at home. By the way, does anyone else have a life partner who arranges to do legal work and/or sign papers for major purchases on the day they tell you not to make any decisions or sign any papers? Anyone? Seems to be a pattern around here...
At any rate, I think we're picking up another car today, some kind of used land rover monster with 80K miles on it or something, because @bonenado's pickup is 15+ now (he bought it used, too), and really should have been retired at least 2 years ago.
Back to my rate, I've been pronounced super healthy by a guy @bonenado actually wishes he'd had the sense to be so he could be making money like that just doing that, and I'm about done with this floating thing and ready for my brain to come back on. I can barely handle basic blog commands.
My dreams were weird and cool and weird and still with me.
All righty, I'm all over the place again, so let's see what's going on. @bonenado made fun of me this morning.
Facebook says I'm going to hell. This clicks back to facebook, and from there you can click to the test to see where you're going.
I really want this blue shirt like Daniel Tosh is wearing. Pic clicks to Tosh on Comedy Central.
I am apparently one of the rarest and most difficult to deal with personality types there are, so it's not surprising that Facebook says I'm going to hell. The pic clicks to the test if you want to find out your own personality, but you can also learn more here.
It's amazing how fast the rest of your face dries out when you have to spit a lot. Spitting sounds easy, how hard is it to produce a little bit of spit? Harder than you think. Our little human spit pouches feel like a big deal until we get graded on how fast we can produce the stuff. (You people thinking bad things, shame on you.)
That's right, I've been flagged 3 different ways for hereditary cancer, and medicare does NOT pay for this, so I'm hoping my supplement plan picks some of it up. The rest will go on a payment plan. I'd rather know than not know, right? My sisters and daughter will all be curious to know the results when I get them about a month from now. No idea if I'm the first family member to be tested, so if I turn out positive for carrier, the results will get passed around privately among a national network of genetically related individuals. This pic clicks to more info.
In the meantime, @bonenado is out picking up more stuff for salssssssa. We've got a tomato hill growing on the counter that needs immediate attention. Oh, and a scope for a deer rifle. We've decided his Native American name is Man With Bad Eyes And Crooked Bow. He also got scent bombs, fox urine, buck urine, a cool vest with a slick back pocket big enough to hold a machete, leg zip water proof camo pants that'll go with his new boots, and a tripod stool for when he's bow hunting. He's demonstrating it to me now. Woops, folded up on him. He's practicing the stand up maneuver. My knees would be too locked in place to stand up from something that low. Every year is pretty hilarious. I should look through my old private blogs sometime and do a special @bonenado post.
Sometimes I just have to pause on minecraft and appreciate that I'm actually part of real time 'living' art.
Real life. I keep telling you guys I live in Mirkwood. My house is on the other side of that huge wall of jungle in front of us there. (insert- that unmown grass on the left is 5-6 feet tall, and I'm not kidding, use the mailbox on the right for context) (and so you now have a mental picture when I start whining about pollen again...)
The forest looms.
We've got several kinds of wild grapes (raccoon grapes are a real thing) and whatever berries, I think this might be bittersweet, but that's just a guess. Between the gallons of acorns, hickory nuts, and walnuts and all the crazy wild berries and fruits around here (persimmon, pawpaw, osage orange), we have no lack of wildlife. Sometimes the squirrel population explodes, sometimes it's chipmunks, other years we might see foxes regularly, it's just up and down, mostly depending on weather and diseases spreading around. Big rabies and distemper area. (Scott just let me know the number of bats in the bat house has tripled since he looked last.)
Yeah, you can tell, right? I'm evening out on my meds this week. This is now my 5th week on gabapentin, first week back on beta blocker, first week of doubled zyrtec, and I seem to be busy and juggling all the things pretty well for a change. I'm able to do things without constantly maneuvering and planning around pain. There's still a bit there, but it's a little more manageable now. I've been able to start my workouts again, and I assess back into physical therapy in a few days, so just being more capable has shifted me into a terrific mood. I know that could be transitory, but while it lasts I have been enjoying getting my new syllabus on track, where I spend an hour every day reading and/or watching TV during the day to keep me time oriented and off minecraft. Minecraft is still hard and fast but less often, and so far my money and calendar syncs are still matching, even though I feel ditzy half the time.
That was quite a confession the other day, wasn't it? I remember in my 20s it was so taboo to even say out loud "I'm depressed." Over the years it was still taboo to admit it even to a doctor, much less a friend or someone from church, because the stigma of mental illness was so prominent that it meant immediate judgement and hushing up to hold down the tittering that would go on behind people's backs. My mother never got the real help she needed because of that. She begged people for help in the only way she knew how, ways that were controlled and sanctioned by a rigid belief system, and she died way too soon because of it, even though she fought hard the only way she knew to be herself, with all her glorious mood swings and the ways she could never quite fit into what people expected of her.
My mom was one of the kindest people anyone around us knew, spending money we didn't have to make sure other people's bills were paid, actually taking food to the destitute falling through cracks, making sure lonely people got cards in the mail during their last days of long illness. I'm not capable of that, but I am capable of standing up and saying I'm mentally ill and the world hasn't ended and my life is good, and I share this because it's important, and I hope other people can learn and realize that standing up for our own truths and honesty is how we survive.
I am not an easy person. I've learned how to be kind, but I'm not naturally born sweet. Hi, I'm Pinky, and I'm ok with myself.
I'm so bubbly full of wordy words this morning that I'm feeling impatient. Too bad I can't just press my head to the screen and think it out to here. #waitingforthebrainchip
First of all, yes, really had a mountain lion ON MY STREET IN FRONT OF MY HOUSE this week. You twitter people ignoring that are just jealous as hell, that's all. @bonenado set up the wildlife cam in the front yard hoping we'll get a repeat sometime this summer. I think all the fireworks going off night after night flushed it out. I live among the slightly better off and extremely patriotic. It's their right and duty as 'Muricans to try to burn these woods down.
@bonenado's brexbist today. Remember that speed vine I retweeted a couple times? That. It works. I need to refresh my muffin tins, though. Using paper cups wasn't ideal.
My internet is slooooow. Wild storms galore, tree down next door, got lots of hail in the pour, now I stay in my door. Ok, let's skip along before I spring into limericks and haikus.
Quickie touch base assessment on howzit going. Cut another 2 inches off my hair this morning. I had cut 3 inches last week or so, couldn't tell because my hair has gotten so long, so I figured another 2 inches would be ok. I can't believe I've taken 5 inches off now and it's still down to my lower shoulder blades. Remember when I got so excited 3 years ago that it was growing back? And then I talked about dealing with all that, and then brought it up again in 2015. Despite the length, I've been losing hair steadily again all spring, but as far as I can tell, it's root regrowth. Hair grows in cycles and people generally don't notice randomly shedding hair and regrowing it year round because it's usually thick enough not to create empty patches. My hair didn't start growing back in until I pretty much doubled my protein intake (sometimes triple, my pre-lifestyle change diet was pretty abysmal), and now I can tell it ebbs and flows when my body is under stress. April was the hardest on my hair this year, and it's starting up again, so allergy seasons and spiking histamine levels definitely affect my hair endurance, which for me means inflammation levels.
I have been tolerating increasing sinus and ear pressure discomfort for a couple of weeks again, decided last night it's time to go back to the twice a day zyrtec, and all it took was that one boost to drain my sinus and clear my skin again just overnight. I come from very white yet red skinned people, and I've lived with an autoimmune flush most of my adult life. When I take prednisone I turn white like magic, and that one zyrtec last night did the same thing. I got whiter through the spring again while I was so miserable with tree pollen but on all that extra zyrtec, and as I tapered down again the last 6 weeks, I flushed up again.
I looked back through my medical history this week, noting dates on certain tests. I used to regularly score 1:16 on ANA titers (positive speckle) (I hit 1:32 years ago and even 1:64 once) and lived with continual moderate SEDs for years (mostly 40-80ish), but we've watched that go away the last couple of years, so I've been negative ANA and normal SEDs for 2 full years now, yay!!! Interestingly, this coincides with getting very stringent with my antihistamines. I started noticing over the last 3-4 years that histamine spikes set off fibro and autoimmune flush flares, but it's getting so obvious now that I'm able to control severity somewhat with diet and antihistamines (and I've had definite input on this from a real allergist, who called it an autoimmune reaction disorder).
I have no idea if this will help other people. I'm NOT saying antihistamines cure lupus, just like changing your diet does NOT cure diabetes. I'm just saying I'm noticing that I seem to have some control over the overall tissue response. I've had other tests scary-spike, like C reactive protein the year I had to be crashed off 2 different hormone therapies, or AST and ALT liver enzymes during steady medication years, and antihistamines don't fix any of that, so don't be dumb, ok? Just saying I'm noticing a correlation between a more rigorous antihistamine regime and autoimmune flush lightening up. You still have to take care of yourself.
Pain, on the other hand, has been off the wall again this month, pretty sure it's mostly weather related. The morphine helped knock it down last weekend but it's a fair bet it made the 'never do again' list after the difficulty I had with it, and then I ground down on daily mobic this week to keep the pain level down a little bit more, but it's just not enough to stop it. I felt great going into the chiropractor a couple mornings ago, but a very sudden wild pop up rained like a lake dumped all over us while I was in there, and I almost limped out of there feeling so rotten all over. I can't take air pressure changes, especially hard and fast, it just destroys me and there's no pain medication or treatment in the world that can stop it from happening. And I noticed last night that I'm seeing phantom light flashes in the dark again, which means I hafta back off on the mobic again before I start seeing auras. Mobic raises blood pressure in the brain and puts pressure on optic nerves, so I normally take it every other day, but this last week has been daily. Doesn't take much of that stuff to do me dirty.
Ok, I'm done with that part. Aren't you glad I don't go on about this every day? I'm just thrilled that I'm not popping into ER every other month nowadays. I've been very lucky that I've never yet been hospitalized, but it's because I obsessively pay attention to patterns over time, like I do with everything in my life.
Enough of that. Back to minecraft! This is an undisclosed location on Kai's realm. I'd never used brick before. It's a special coordinate combo using my fave number, so I planted roots there.
And it happens to be fairly near an uber giant mushroom! That realm is still survival (although I play creative more and more there lately so creepers won't activate), so I'm in process of establishing self proclaimed boundaries and I'm going to light that forest up like crazy and fence it off. Maybe I can make it look elvish or Hobbity or something. Incidentally, I've never run across so many naturally occurring giant mushroom roofed forests as in Kai's realm.
I got 4 hours of sleep last night, so I'm not sure how the rest of the day will pan out. I've actually been up doing random stuff for 7 hours already. I've got cool stuff going in my own new realm, but no pix yet and I'll put them on their own blog later. Getting Bunny pix in from a water park, maybe I'll share them later.
I'm on the verge of taking my mouse apart because that button is sticking so bad now that I lost whole sections of this just hovering over. Little sticky hands, my bad. I'm lucky Jawn's keyboard is still fairly free of problems, although he stopped going full shut down because someone changed a setting somehow. As long as the internet isn't erased, we're cool, but maybe the sticky police need to pay more attention to the tech.
A couple of days ago I mentioned a big hard day out with Bunny, and then on twitter yesterday I said pix coming, and here we go, after I say a couple things again.
I got a little lecture-y in that mention post about tears for a commercial. That commercial was a concocted fictional story designed to yank your chains so you'd spend money (with a nice cover agenda), and apparently it was a wild success. I've already done my crying, thank you. After going through being DPOA for my own parent in a nursing home for 5 years, I think that ad sucks because a little wave from a very long distance without a single word or touch is still pretty lame. An aging population not being 'visited' by family probably means there are some pretty full plates out there, and thank goodness there are programs and facilities in place to help us care for our aging parents.
What I'm about to show you is real life, and in the mention post I said I shut off my feels so I could handle the hard. Before we get started you need to understand why I said that. We have lots of experience in our family. My sister's oldest daughter grew up in and out of hospitals and finally died in one, and then she nearly lost her only other child several years later after a car hit her in a crosswalk and they reconstructed her leg (nearly lost it) and got her through some pretty sucky head trauma. Our Bunny's mama had a very terrible experience herself in a hospital and had to be transported across the state after a surgery accident, and she and @bonenado were there through Christmas with Sploit and I not knowing if they'd both make it home, so that was a sucky holiday for sure. I've visited the Cystic Fibrosis wing in a research/college hospital a couple of times, full of kids who get dropped off by parents for routine yearly 2-week 'maintenance' or more imminent needs and testing. For someone who's never actually been admitted to a hospital despite having heart surgery (outpatient, believe it or not) and the plethora of miseries I've suffered (including a really bad car accident), I'm very familiar and even comfortable in them because I visit them so much. I even say in Explaining Depression- "If I had the stamina, I'd be volunteering at one of the hospitals, because I love hospitals and feel safe there. I've spent so much time in hospitals hanging out with other people that they feel like home to me, even though I've never been hospitalized myself." By the way, I don't watch hospital shows on TV. My fave part to hate on in hospital room scenes is the character ripping or taking the IV out without any blood spurting around or even applying pressure or covering up that spot, and then just walking right out. I once accidentally tore an IV out and blood so thoroughly shot all over the room and everything in it that I felt like I was the star in a horror film. What is the point of realistic filming if IV scenes are so blown off, yea verily.
Just a quickie for people still feeling teary-eyed or even guilty over the 'man on the moon' ad- take a book, take your knitting or ipad, pack nibblies in a lunchbox, pack activities for kids, and plan on hanging out for awhile when you go visit old people in their home or care facility. You don't have to talk and make eye contact that whole time (it's hard for some older people to talk anyway), you don't have to 'do stuff' for them, just show up and hang around, take a break and walk around, eat in the cafeteria with them (or by their bedside), and when you say goodbye, just say you'll try to come back soon. Very simple, no pressure. If you think you'll have a hard time, take xanax or something before you go. I had a very hard time with it. I actually fled the building a few times feeling very sick. Make yourself psychologically comfortable with a little help (don't go in drunk, guys), and just be yourself hanging out. My mom's care facility had a resident cat that creeped the hallways and visited all the rooms, and a bird cage, and a fenced 'back yard' with a bench and a big tree, and even a small lending library with books and magazines (another idea for charity- donate books and magazines to nursing homes!!!), and a giant fish tank. If you're stuck for a charity idea this year, go poke around a local nursing home. And take socks.
Ok, back to Bunny. I haven't been saying much, but we've been watching a little problem for several months, and now we're going through steps making sure other bigger problems aren't going on. She's ok. Not out of the woods yet, but passed one of the bigger tests with flying colors.
Things are so different nowadays. When I was a kid, medical tests in a hospital were way more traumatic. Kids were treated very differently, barked at to behave, and then parents were frowned on if the kids were nervous or afraid. I was a screamer (#aspienado), but I also had a very controlling parent, so when I had a barium enema at around 5 or 6 years old, I did what I was told but the trauma was almost inexcusable, and I certainly wasn't reassured in any form before, during, or after. (Bunny had a different test, but still invasive.)
having a toy to bite on while waiting is good
Bunny's experience was very different. She was allowed to be a real person, spoken to like a real person, given time to process and understand requests, and was handled by empathetic adults all around. The tech told Bunny's mama she was the quietest 2 year old they'd ever had (as in not screamy) and I believe the reason is because she trusts her mama so completely. Circus baby (yowza, that post looks like it's been invaded with viral ads or something) is one example of a full blown ADHD person raising a full blown ADHD baby. We are strong advocates for neurodiversity (I have Aspergers) and it shows in how well Bunny behaves in new and sometimes scary situations.
As scary as medical stuff is (I have outstanding anxiety around MRIs and stuff), nowadays we are surrounded, for the most part, by people who are much more empathetic and very well trained, and all the stuff we go through is to make sure we can be as healthy as possible, no matter what is going on with us.
The waiting room is hard, too. I brought stuff to do, but I got a little silly. If I hadn't been on the very edge of my phone plan, I probably would've been tweeting. I was surprised how quickly they got done, and next thing you know, there's a Bunny telling me c'mon, let's go.
She even got a little baby to take with her. No one ever gave me a little baby after stuff like that when I was a kid.
The best part about hospitals nowadays is gift shops and coffee shops and places to hang out that feel more like a mall or something. I know it's hard for some parents to allow a child to feel like they have some control in public situations, especially if you're not sure what they'll do, but I've become very comfortable with 'busy' little people. You just hafta get in busy gear along with them and keep up. Once they own their space, they get over stuff real fast.
Grampa couldn't be there, but we knew he'd have picked out this penguin. He really likes penguins.
Second breakfast, like a Hobbit. I heard she ate 2 pancakes before I picked them up, and now look at her go! (Even during a tooth coming in, wow.) Big stuff makes a person hungry. Hospital cafeterias rock, I don't care what anyone says. I've eaten many meals in 'canteen'.
And then it all catches up and we get tired.
That penguin looks like a second child.
The older doctor who ordered this test was very kind, like a grampa doctor, but he had ordered sedation for this test, which would have required driving to the university hospital in Columbia. @bonenado and I were all for this plan after the traumas we've been through as kids during medical testing and stuff. However, Bunny's mama talked to a nurse who does this test all day on kids and she advised against sedation for several reasons (sedation complications outweighing trauma problems), and after being told she'd be allowed in, went ahead and scheduled for local, which would be much less stressful for her because work and other things. After listening to her research and knowing she'd be there where Bunny could see her and know her mama would see what she's going through (since a child that young can't verbalize and communicate fear later when memories come up), I was ok with it, too, and tagged along for support. I really and truly believe the worst things adults do to children is tell them to shut up or be still during fear and nerves, and then not walk them through the emotional process. I touched base a little about how shut down I was as a child and what I'm still working on with a psychologist in hybrid- how robots go on. I think a lot of adults around my age range are having midlife crises because of traumas they never effectively or successfully processed as children, and that leads to feeling helpless and powerless as adults and consequently making bigger emotional demands on other adults, leading to divorces and all kinds of other things. We are all broken.
I am very proud of my Twink (Bunny's mama) for being so patient with her kiddo and making the world better for her. It actually turned out to be a good day. This is me taking them to the back side of the parking lot because I got the closer spot.
After that we split up, and now I have other pix.
Despite going through one of the most brilliant and longest lasting autumns we've had in years, I've gotten very few pictures, after years of being obsessed with photographing autumn. So I grabbed a shot while I was driving, lol. Now I don't feel like I missed autumn. I made a much bigger deal about it last year.
A guy @bonenado works with makes wine, and this is made from my sister's blueberry field.
I really miss being able to tweet pix from my phone, I used to do that a lot. @bonenado and I got a rare day out yesterday, went to town super early and hung out piddling and running errands for a few hours. He's a big Hot Wheels collector, so I wind up looking through them, too, and I can't get over how silly the licensing has gotten. Really? Can you imagine Lexx Hot Wheels? I mean, at this point, I'd love to see anything merched with Lexx on it, it would mean something's actually happening with the property. Oh, well.
Then we wandered around several Christmas shops in the stores we visited. This one would be perfect for #latenightmovie gang.
And this is just cute.
No, we didn't buy any new ornaments. EXCEPT. We found a matching robot, so now we have a @bonenado robot to go with Pinky robot that we found a few years ago.
I know some of you really hate early Christmas music. After YEARS of refusing to even listen to Christmas music, I'm finally in a little bit of a mood again. Still twisted, but it's kinda back.
And then I spent the rest of yesterday nearly in a coma, blissfully drifting in and out of consciousness. And then I pretty much slept all night. And I'm still so brain wasted that I just now caught that typo from yesterday.
Today's a big day. Much of my adult life seems to have been focused around big days like this, in and out of Schrodinger's cat box, lol.
