altarflame: (deluge)
Last night I took a lot of care to make Grant a food/drink bag to take to work. Note: this is not a standard thing, as 1.) he works from home 3/5 days each week, 2.) he likes to go out to lunch, and 3.) he does half the shopping and cooking and would be as likely as me to pack stuff if he wanted stuff packed. But he wanted some leftovers and went to bed too tired to put it together. He's gone ALL DAY when he goes in, since the commute is so intense.

Anyway, I was smiling as I packaged him up a container of chili with a tiny tupperware of shredded cheddar, a ziploc of crackers, and a tiny tupperware of cream cheese to go on them, since this is how we garnish chili around here. Then a container of kale and bean soup, with an extra side tiny tupperware of parmesan cheese. Spoon, butter knife. Found and filled up his water bottle and put it all in the bag in the fridge.

It was very satisfying this morning when he texted that he'd been forced to smile against his will at an ungodly morning hour when he saw it all, and accused me of grin-rape <3




I started seeing a new doctor today, because the levels of disorganization at my old doctor reached new heights. They don't answer the phone or return calls (ever - I always end up just driving over after several days' efforts to reach them), they don't even return faxes from the pharmacy when I need a refill on my B-12 vials. They don't draw blood in the office and TWICE now they've told me they sent in an order for me to have blood drawn and then when I get to the lab, sign in and wait to be called, I find out they actually forgot to send the order. So I just have to leave. Worst of all, especially with reference to all these other things I'm describing, they are only open for a few hours 3 times a week since their old office had a fire a year ago. They've been sharing space with another office ever since and I was trying to hang in there for them, but man. It's a shit show. Totally representative of the whole place that the empty water cooler has had a paper sign taped on for months that says, "Please buy water!"

Anyway, this new place is (of course) half an hour up the road, but anytime I leave town for any kind of medical care, it's a revelation and I'm glad I did. When I got to this new place today, they had a personalized stack of forms waiting for me that had been printed already including all the info I gave them over the phone when I made the appointment. Can you imagine? They also drew blood right there in the office, which was generally much nicer, more spacious, and full of friendly people acting like I was a human being.

I really don't love giving new people my medical history because the shock value is too high and they always go on and on about it. However, the doctor today was a former OR nurse and actually cried and apologized on behalf of the medical establishment, for my retained surgical instrument. Simultaneously kinda ridiculous and kinda amazing.

It's good that things can be efficient. I was really clinging to the old doc being half a mile from my house (we have to get on the highway for SO MANY THINGS already) but it's clear this will actually save me time and energy, backwards as that might be.

Tangent: It was getting seriously old with the other doctor, feeling I was hassling them and getting so many suspicious looks and questions from the office staff every time I was "back about the shots again." Seriously, who the fuck has a B-12 problem? It's not exactly a controlled substance. Over and over the secretaries acted like I wanted it for weight loss, asked if it was helping me lose weight, etc, and over and over I had to explain that I have a diagnosed malabsorption condition and need it for basic functioning/survival. UGH.

Sometimes it's still wild to me that I have this chronic condition and need these shots forever, and yet I could easily just stop going to get them. Nobody's gonna make me - nobody official is keeping track of whether I do or don't. Quite the opposite; I often have to fight through red tape for them. The gastroenterologist who diagnosed me acts outraged every time I express any of this to him and offers to fax my lab results to more places, but it's not like he does continuing/follow-up care himself.
altarflame: (deluge)
I am really at a loss as to how I can slow down, be happier, relax, and still give all of my kids everything that they need. Stretching helps. Meditating helps. Drinking enough water and making sure I step outside often enough is nice. Lots of things help for anywhere from 30 seconds to 15 minutes.

It's WONDERFUL to be able to go and go and go, again, now that my shots have taken effect and I'm no longer sick, exhausted, and in pain. But I don't know how to relax, now. Part of that is that there is so much to do, part is that I was pushing myself through much worse conditions than "plain old" mental exhaustion and tension, and so my cues for when to scale back are totally screwed up now.

There is also a combination of real backed up work (at school, with our house, mostly with each kid) that snowballed while I was napping, weeping, and/or sitting in waiting rooms, and my own terrible self conscious guilt about how much of that all backed up. I think on some emotional level I feel like however much it hurt, however hard it was to cope with, however terrible living at doctor's offices can be, I focused on me a whole lot for a long time. And it worked! I'm better now! But it seems selfish to focus on me anymore, at all, as a result.

And I'm...frenetic. There may be an element of my body and brain readjusting to having ENOUGH B-12 again? Because I feel almost jittery at times, like a constant caffeine buzz. I can't stop moving my feet around when I'm sitting there. I was really in a fog for months, so, it's got it's benefits as I DO ALL THE THINGS, but O_O

I have also turned a significant corner, in therapy, as of about 2 months ago, and I feel radically less triggery and ptsd'd out ever since. It's there, but it's so much less a hindrance than it's been in years past that I feel...free? Normal? It's big. And, again, that's great. But, again, without having terrible depression or internal freakouts when I don't take care of myself...I just kinda don't take care of myself. I'm realizing things randomly, like, wow, I haven't spoken to a friend, any friend, even online or in text, in a WEEK. Or, I haven't went and exercised in...TWO WEEKS?!

All my resources are just going to this deficit I've built up, since I can attend to that deficit now.

After teaching my kids all Friday morning; taking all 5 of my kids to the dentist Friday afternoon; blitz-cleaning with them for a frantic hour; and then hosting Laura and her kids and Shaun and his girlfriend, plus baking and frosting a big cake that night (Grant cooked dinner) - then I woke up super early Saturday morning and took A&A with all their supplies up to audition at the arts charter. It's far, it took many hours. When we were back home I tried to chill out and just water and prune all my plants, talk to Elise, enjoy Grant making soup, but it's like I can't kick the manic anxiety of having already pushed myself too hard. Because this is just a close-up example of how ALL THE DAYS, strung together, with no rest days, have been for weeks. Last night at the "end" of obligations, he and I got in a stressful conversation about his work stress, his self esteem issues, his generalized fears and things that do and don't effect our relationship. I cleaned our entire (gross) bathroom to take a bath and relax, and then laid awake in bed until 3 am. This morning, I had to be up by 8 making a huge breakfast for everyone before taking Annie up to her end-of-the-year mentoring showcase performance, where the rest of the family eventually met us.

I don't even wanna list it all, everything we've done today. Or Thursday, before I arbitrarily started the last paragraph. Every day lately is too much, never stopping. It makes my head hurt to even start with the listing. Last Wednesday, which was overwhelming, Grant wanted to budget and then plan the logistics of how today would go, and by the time we were almost done I felt like I was going to cry. "Normally," historically, things might SOUND overwhelming on paper but in each moment I was chill and ok and so things really did just SOUND that way. I don't know why that seems so challenging now. It's like the last piece of the puzzle I'm just not getting - how to be present and enjoy stuff as it's happening. How to ride the wave. I've been riding the wave by coping with things that are NOT getting done, for too long :/

I'm not yelling or angry. I do probably seem hyper or irritable at times, though often I keep that together, too, and it's just an internalized pressure buildup as I stretch further and further.

I go in these circles, that are comprised partially of these things:

-what can I let go of?
-part of the problem is definitely all the driving
-we can't afford to live closer to things
-I'm not willing to let things go
-I feel like it's totally unacceptable to punish any one of our kids for how many kids we have. Like that is not even an option. Whatever they need individually is irrelevant to our family size, in my mind.
-is it fair, right, natural or ok, for parents to sacrifice SO MUCH of their entire adult lives for their kids? For how many years? It wasn't expected or common until very recently; kids fit into existing adult lives. Not the other way around. I don't want to be that parent. They need to see a model of a wholly realized person who is happy in their own life...don't they?
-but, yeah, that is on me, that I had 5 of them, of course that will be massive and often take over my life completely for long periods.
-and they each have a LOT of unattended, unstructured time. There are just a lot of them, so it adds up quickly when the attention and structure is so often coming from me. I don't have even one overbooked kid who doesn't get hours to do whatever they want at home, every single day. It is truly just cumulative effort because of the number of kids.
-this is going to get harder before it gets easier, I just know it is.
-can we afford a housekeeper?


I don't know how much it plays in, but Grant thinks it's HUGE and not something I'm giving myself enough credit for, that I've been strictly on weight watchers for over a month. I normally (my entire life...) do a lot more food-for-coping. He's probably right. I chew absurd amounts of gum.

I have a couple of hours here alone right now. Before opening this, I was using them to read health psych (heart disease and diabetes chapter). But I am so keyed up, sore, unrested, I don't know HOW to relax.

I don't know HOW to be happy. Like I know all the reasons why I should be happy and I'm not sad, exactly, just frustrated with... I don't even know what :/ "Just" frustrated. Random frustration.

I mean I'm playing Enya, naked, drinking hibiscus tea. Attempting to very leisurely read my chapter's slide show. And I'm a kinked-muscle mess (eventually giving up and composing this entry).


I suppose that, taken as a whole, the problems I have are about getting better in huge ways and transitioning to improvements. I just have to zoom out and see it that way intentionally, at times.

*deep breaths*

One thing I really, really need is more breaks AWAY from my children. ALL of them. Grant's talking about giving me a couple of hours each Tuesday evening. I sometimes have Sunday afternoons, though they are (supposed to be) for studying and cleaning.

I can't do what I did when they were much younger and just stay up half the night by myself every night, any more, and without that break in between the sort of days we have I start to crack up. Maybe I'll use those Tuesday night hours to host a "book" (wine) club, or something that is easy but would actually gain me some adult interaction. I really, really need adult interaction.
altarflame: (deluge)
Maaaaan I really needed a weekend to hurry up and happen, so, hurray for that.

We still have all kinds of crap to do on weekends, but none of it is the most tedious or draining stuff that I do, and Grant is around double-teaming the cooking and childcare (or the two of us are off on our own).

Biggest tedious/draining weekday things, lately:

-painstakingly sounding words out with Elise, and reminding her a million times of a handful of little phonics rules; her language arts work is mainly in Kumon books of rhyming words and phrases that group things by consonant blend, right now (we sometimes also use Abeka's "handbook for reading" and Starfall's 1st grade curriculum, and supplement with BrainQuest, as well as snail's pacing our way through little leveled readers together...). It takes about an hour to get through three short Kumon pages with just a few 4-6 letter words each, because I make her actually do it - she wants to just trace and copy without knowing what she's writing, or guess that the word is what the picture seems to show and move along with the wrong assumption. Then, when Grant gets home, she spends 10 minutes trying to tell him all the words, with a little bit of coaching. At the end of which he generally stares at me aghast and thanks me for being patient :p Which is actually REALLY VALIDATING and helpful because the other kids certainly do not appreciate me being completely absorbed with her for half the afternoon (when I count in other subjects and conversations with her). I'm not sure at this point whether this is more frustrating when we sit at a table together with nothing else going on, or when it's an ongoing part of my cooking in the kitchen and she has a chair in there. THANK GOD she really loves schoolwork and WANTS to do it, and gets really excited about her own little leaps :) She did have a very noticeable "leap" this week, too, which is nice and gives me some hope. She actually told me the three things she was SO EXCITED about were her Girl Scout zoo sleepover this weekend, her birthday coming up, and learning to read. Be still my heart! Even if I am gouging my own eyes out at the end of each teaching session.

-reminding/keeping on top of Aaron about his schoolwork... Ugh. He's so sensitive, and absent minded, and easily distracted, and smart, and frustrated with himself. He, also, has had a little "leap" - he did a big amount of bedroom cleaning in about 30 minutes mainly just because he wanted to, this afternoon, and has been taking showers without me badgering him the past few weeks. And he IS actually doing a math assignment and reading a chapter/writing about what he's been reading every day, for the past 3 weeks, so. We're getting somewhere. But it's not where we need to be. It often takes all day long and way too much stress. It's reasonable and plausible to expect him to catch up when he doesn't do what he's supposed to do, this year, rather than just losing that slack time and falling behind. But he's still a little behind (in math only) because of how far behind he fell the couple of previous years. I THINK we'll be able to get him to grade level in math by the beginning of the next school year. Grade level actually starts to matter in a big way once a home schooled kid hits high school age because if you want a diploma rather than a GED you have to have transcripts that show all requirements ticked off. Up to that point, it's something most parents value that they can be doing 11th grade science, college level reading and 5th grade math if that's where they're at when they're 10 or whatever. Aaron's in 7th now. And fwiw I totally cannot tell whether the caffeine is having any real affect.

-phone calls. HOLY SHIT THE PHONE CALLS. This week I've had to call their dentist's office, Nissan 3 times about our van and rental, I've spent an hour and a half total on hold with Miami Children's Hospital about Elise's neuro eval, we have this ongoing dispute with the dept of solid waste management about a trash pile left by and collected for the previous owners of our house, Isaac's teacher, the arts charter A&A are auditioning for, the disability office at FIU, it. never. ends. While I was in Jacksonville last weekend I managed to lose my credit card and managed to spend over an hour on the phone with Capital One. I'm just so done with the fucking Responsible Adult phone time.

-Jake and his bedtime woes. I send him back/make him actually get into (rather than playing next to) his bed a million times every freaking night. He still continuously acts surprised that he's expected to ever sleep. He gets RIDICULOUSLY emotional. On Friday and Saturday night we let whoever wants to sleep in the tv room with a movie, so we don't deal with any of that. And that also takes the place of their before-bed reading, which is not really a tedious thing for me but just takes a long time.


Some good "weekend" things, this weekend:

-wine and Netflix marathon, Friday night.
-Starbucks, in a leisurely, just Grant and I way, Saturday afternoon.
-G and I went and saw the Grand Budapest Hotel last night :) With contraband Ben and Jerry's. It drug a little here and there, but I also laughed out loud a bunch of times. I wasn't huge on Moonrise Kingdom, but in general I ♥ Wes Anderson.
-wandering around the farmer's market with Elise this morning, while Annie was at a dress rehearsal. We picked Elise up from a zoo sleepover her Girl Scout troop just did and she was SO HAPPY (relief - I was afraid I'd be headed up there in the middle of the night or something when she freaked. But she had a great time. We even called Oma to tell her all about it). I'm really happy with that market, you can get a bunch of rainbow chard, some leeks and a sack of purple heirloom green beans for $9. Or, a whole fresh pizza you watch the guy make from dough in a portable brick oven, for $9. It's not too bad. There is an actual french baker with amazing stuff, and Grant is becoming addicted to the sausage. He brought me edible flowers to cook one week :) But I think we have yet to even hit $30 total spent in a trip. It's like some kind of revelation, I'd previously only been to markets like this in other states. Still not quiiiiite Silver Spring level, but I'll take it.
-being home with just Aaron (who is really REALLY chill when the house is quiet and calm) and Elise, for most of today, while Grant totes Annie to her things and hangs out with Isaac and Jake. They have a Sunday afternoon Life (board game) ritual. I took a nap. I talked to my sister on the phone for an hour and a half (<---not the terrible kind of phone call). *good sigh*


The coming week is going to be loaded with all manner of horseshit. A&A only have a week to get their audition materials ready (for TWO arts areas each), and we're a week and a half away from PATH's "Mythologically Speaking" event so that's planning, costumes, verbiage, and memorizing. Jake and Elise need a lot of help with their characters, even though we keep their bits simple. Annie also has a lot of practicing to do, if she's going to be ready for the mentoring showcase next Sunday, and that's something I have to push her to do. She's going to need a schedule of extra home practicing, or else it will all seem overwhelming and cause her to just freeze. I'm meeting with Isaac's teacher. Isaac also needs a birthday present for his best friend Andrew's birthday party. They're all going in for dental cleanings and checkups Friday afternoon. Aaron has earned a trip to the Aviary, that I am not excited about but will be pleasant for :p We also REALLY have to unload the rest of these @&#*(^$!* Girl Scout cookies. blah Blah BLAH, basically.


...I just realized I never went and got my shot last week. What the heck. I carry the injectables around in my purse and refer to them as my arc reactor, because I still can't believe I'm really back to normal - HOW could I forget that?
altarflame: (deluge)
Because of some reading I was doing for my Health Psychology class, I have spent the last 10 minutes researching morbid obesity, which I qualify for with my big ass BMI. Just my big ass, really, haha.

The shit I'm seeing is SO OVER THE TOP RIDICULOUS. From an eHow article: The morbidly obese live a lifestyle that is significantly impaired by their weight; most can't move without assistance. Uh, I power walked all over a university campus this afternoon, several times, and took my son on a bike ride this evening. Those are normal things for me to do multiple times per week.

My Health Psychology textbook talks about the health risks of morbid obesity, and they include things like not being able to have imaging tests penetrate your fat, or have a blood pressure cuff fit, or sit in a normal wheelchair if you have an accident (I've never had any issue with any of these things - and I get my blood pressure taken A LOT these past months. FYI, it's low normal). They also go on about how the morbidly obese often can't see a doctor since it's so hard to get in and out of cars, or the offices themselves.

Perhaps we need to change the cut off ranges or something, because I have no idea what they are on about. I live in the fucking car and at doctor's offices, unfortunately, and for non-fat related reasons :p I suppose that since "morbid obesity" includes both 235 pound people and 935 pound people (and right on up to infinity), it's easy to say "most"? I dunno, man.

ANYWAY.

On a tangential note, I have finally had enough B12 shots to feel like I can exercise! Because while basic mobility was not a logistical issue, I have just had zero energy + constant joint pain while anemic, and most of all NO AIR to exercise with (B12 is necessary for the production of red blood cells, which carry oxygen throughout your body). Restarting C25K Sunday was soooooo different than when I started for the first time, last August. That whole debacle makes so much more sense to me now! I have normal "hard exercise" symptoms, now, like sweating a little and muscle soreness the next day. Not I-am-going-to-die breathing issues. Breathing was my main issue before, with joint pain as a second. Way better! "Just" sweating and having muscle soreness seems like a freakin' breeze.

And I almost never have any "resting pain" at all now. It's pretty awesome and still sometimes just astounds me.




I started writing a long, rambling entry one day last week, about all kinds of things, that got closed but auto-saved with the site. I got too busy teaching children and running around to ever finish it, and am not sure it's very interesting anyway, but here it is. )

Well.

Jan. 6th, 2014 04:28 pm
altarflame: (deluge)
I just got diagnosed over the phone with pernicious anemia.

Basically that means my body can't absorb B12 from food anymore. So, I have to get B12 shots and/or take oral megadoses of B12 for the rest of my life, because symptoms of serious B12 deficiency are straight up terrible - everything from exhaustion to dangerously enlarged liver - painful joints, nerve damage and "impaired cognition," and heart arrhythmia, weakened bones...generally speaking, though, as long as you get your shots you're fine. "Pernicious" means deadly, because this used to be a death sentence, before it was so easy to supplement the B12.

Causes can be autoimmune, wherein your immune system is attacking a protein your stomach normally makes called intrinsic factor, which enables your digestive system to process B12. Eventually your stomach lining gives up even trying to make more intrinsic factor and you just don't have any. And I do have inflammation, which points to autoimmune issues.

It can also be because you've had part of your small intestine removed, which I obviously have.

It is scary as hell to think that I've been falling down stairs and unable to move myself around and CONFUSED all the time, because of this. My numb, tingling, weak hands... I am trying to just console myself that lifelong B12 shots are wildly less terrible than the colostomy bag I was warned I might need (in 2007, pre-op). And, pernicious anemia is not degenerative as long as it's treated, so obviously that is a much better option than RA, which I was very afraid of...

People with pernicious anemia are about 3 times more likely than the general population to develop stomach cancer. The normal odds are very very good/small, though, so that is still "only" about 4 out of every 100 people who have pernicious anemia that are getting it. Except that being hispanic also doubles (or more) your risk factor for stomach cancer. And that is like, basically the least survivable cancer, since it's almost impossible to catch early. NO WORRIES THERE O_O

And so I am trying to console myself that I really could have died in the ICU, and I didn't. Instead I have somewhat increased odds of one day developing a rare cancer. WAY BETTER, right? I mean I'll probably die on a Miami highway before that could ever happen.

Pernicious anemia is also called megaloblastic anemia, because what it really is, is an inability by your body to produce enough healthy red blood cells, since B12 is used in the production of red blood cells. Instead you have these huge, too-few red blood cells. Which effects you systemically, until you start supplementing.

Apparently there is irreversible and reversible damage happening leading up to diagnosis, while your blood is all wack - brain, nerve, organ, bone, TEETH (I've gotten 10 of my 15 fillings done so far), etc...and this varies for everyone. The earlier you catch it the better, though, as far as what goes back to normal, and it seems from my reading that most people are way worse off than I am before they do figure out this is what's going on.

I would like to think this is related to surgery partially because otherwise it is very hereditary; one of the things on the list of things to do is tell my kids and siblings all about it, since any of them may also have or develop it.




Five minutes of crying, half an hour on the phone with my sister and some distractions later, I am ok with this situation. There was still some part of me hoping that the potentially subjective things I was suffering from could add up to be, you know...nothing. Something that passed unexplained, or was at least curable. But (like Laura said, and is obvious...) things have been way TOO wrong for that. So! This it is :p It means doctors appointments forever and explaining this to people over and over and over, and all in all it's not so bad. It shouldn't be hard to get my disability allowance for last semester when I explain WHY I was a wreck with a firm diagnosis, either. And it should also not be too hard to get back to being a better student.

I am slightly squinty eyed with suspicion about how this can sometimes be a piggybacking disorder that coincides with some other problem (like RA), but, you know...we'll cross that bridge if we come to it.

May 2017

S M T W T F S
 123456
78910111213
14151617181920
21222324 252627
28293031   

Syndicate

RSS Atom

Most Popular Tags

Style Credit

Expand Cut Tags

No cut tags
Page generated Sep. 20th, 2017 09:15 am
Powered by Dreamwidth Studios