disapproving kitty

Tuesday, September 29, 2020

I Manage with a Vegan Diet, Daily Meditation and Horse Tranquilizers†

 Came across this today in one of my FB groups. It was a response to some asking what people with EDS use to treat pain. People mentioned all types of NSAIDS, gabapentin, opioid - derivatives and such, but this one made me do that laugh/cry thing.

"Healthy diet, light workout (sitting or laying down), no caffeine and (wait for it....) Medical Cannabis."


At first I was about to want to smack this woman for starting up with the whole "Oh, manage your pain naturally with yoga and granola!" mantra. (yes, people say this kind of thing.) Then she just brings it all home with the pot. Now, I'm not dissing cannabis as a legit way to manage pain and honestly if a side effect wasn't extreme munchies I'd be trying it myself. But lady, those first 3 things aren't what's doing it for you. You could have a diet of ding dongs and coffee and the pot would still be helping with your pain. (Not to really disrespect a good diet and exercise, either -- I try to do both but I still hurt all the freaking time.)

Speaking of that, it's nearly October now, which is about 2 months after my last update regarding the whole flare-up thing. 

About a month ago, my hands started to hurt again. Like, I can't turn doorknobs, it's hard to turn the ignition key in the car level kind of hurt. I need to get a different style of braces to help with it, but I hate, I mean really, really hate trying to explain to people why I'm wearing a brace so I don't want to wear them. 

This morning, the 29th, I woke after a decent night's sleep with every joint hurting. I'd stay home from work but the truth is that keeping busy is better, even if I pay for it later. The only good part is that there are no digestive issues this time, and no nearly blacking out when I stand up. But I seriously have no idea what is bringing this on. 

Stress? Aging? Bertold Rays?*

I wish I knew. Eventually I'll get myself on the doctor visit merry go round again. Like Charlie Brown and the football, maybe it'll work this time. 



*Star Trek:TNG reference for the non-nerdy

†just a joke, mom. I don't take anything stronger than ibuprofen

Monday, September 28, 2020

Ain't Nothing Standard About This


A teacher friend of mine posted a story today about a teacher in Texas who is ready to throw in the towel. She's plagued with buggy, untested software, no training, no A/C (in TEXAS?!) no time to plan and no support. Excuse my language, but no shit. Of course she's ready to chuck it. I'd be looking for the nearest exit after the first triple-degree heat day with no air and everyone in masks.*

It doesn't have to be this hard.

This is a failure of administration, and from those who fund, (or don't really) schools. It is an utter failure to plan. My heart goes out to this teacher. While I know my district isn't perfect, I'm immensely grateful that they put together teams of teachers to build an online curriculum over the summer.** They offered lots of PD. Our superintendent vowed that if the A/C went belly up, we'd teach online till it was fixed (and by and large the A/C has been okay. It was bad a couple days here and there in a few classrooms.)

Don't get me wrong. This is hard. We see our students 10 days a month, and some of us see them far less. I see mine 1 time a week, for less than an hour and the rest of the time I do my best to help my overloaded teachers have the support they need to support the gifted kids on their own. We still have demands from all quarters that insist we deliver everything to everyone as though it were a normal year. But like the teacher in the story, a lot of us are planning for tomorrow instead of the next two weeks. When half the class may or may not have done the at-home assignments the previous day, even planning for tomorrow is a crap shoot.

We are, all of us, treading like mad to keep our heads above the water while simultaneously flying by the seat of our pants.†

So maybe, the thing we need to do before we drown or crash, is to let go of is the weight of our own expectations. 

The state is considering canceling state testing. That would be a huge start. This is not a standard situation, and standardized testing would do much more harm than usual.
They are also considering canceling OTES. (The teacher-evaluation system, for the happily uninitiated.) At the very least, they should be instructing administrators to take into account the overwhelming amount of work the teachers are doing, for far less payout. I have no idea if that's happening. I can only hope.

But mostly, every single player involved in this drama needs to change their expectations. The students. The parents. The teachers. The administrators. The taxpayers. The State. Every single person needs to wrap their head around the idea that what we get out of this year will not, in any way, match a "normal" year. It can't.

And that sucks. It especially sucks for the Seniors and kids who need extracurriculars like they need air, and for so many others in so many ways. But asking our teachers to work themselves to the bone, 12 hours a day, 7 days a week will not bring normalcy back for everyone else.

Let go of the weight of your expectations.

Every year, I get at least one kid whose parent comes in and says "Her dad and I are getting a divorce. She found out last night." My goals for that child instantly change. Great leaps do not happen during a year of personal trauma. (Maybe you've got a "but this one great exception!" story of the kid who won the Nobel Prize the year her parents divorced. Fine. Go you. But expecting every child to be that super-resilient 1 out of a million is not a reasonable plan, and we shouldn't bank on it.)

This is the year of great personal trauma.

If we can get through it upright and breathing with a little progress thrown in, we're doing fine††. 

I know that some folks have gotten this far and are aghast that anyone would ever dare to suggest lowering our standards and to them I say this: They are not lowered, they are different. You want to talk about personalizing education? Expecting last year's achievement under this year's restrictions is about the least personalized you could possibly get. It's demanding that the basketball player with the broken leg get up and run sprints because that's what he did last year. 

To all involved I say, let go of "should be" and "normal" and extend some grace. Extend it to everyone around you and if you're a teacher, especially to yourself. 

Let go of the weight of our expectations before they crush us all.




*those inclined to complain that we're all being too soft and weak for not being able to tolerate life in masks with no a/c can go pound sand and write on their own blogs. When CEO's of powerful companies have to work productively in 95 degree heat, I will start listening to claims of weakness. Till then, zip it.

**not to brag or nothing, but it's really good. Like, I'm seriously proud of these people. Sometimes I can see my colleagues' imprint and hear their voice in a lesson and it feels pretty cool to know I work with people this excellent.


†yes, I'm mixing my metaphors. Sue me.


††Serious side note: I do know that for some kids, our neediest kids, we need to do more at every level to keep them from losing ground permanently. I know this. Which is why it is so very, very important to maybe lessen our expectations for everyone else just a little more.

Friday, July 24, 2020

A Little Update for Posterity

It's July 24th now. Nearly a month after the flare up of my earlier post began to taper off. It didn't really taper. It sort of plateaued. I finally went to the Dr and she prescribed prednisone, because from all appearances, it just looks like my immune system is still on high alert and attacking, well, all of me. So maybe the steroid can get it to calm TF down. 
My blood pressure was something like 95/62, which is low even for me.* I still get dizzy when I stand up and I'm also having vertigo because the crystals in one of my ear canals is out of whack. There's a neat trick called the Epley Maneuver to help fix it, but it sometimes takes several repetitions. 
To sum up, then, all the symptoms are very slowly receding, and settling into a "current normal" of constant low-level pain. I hope it lets up. 
In the mean time, it's messed with my sleep schedule and I'm up after midnight blogging.**
I have one more month before school starts again to get better. 
Here's hoping.


*Fun EDS fact: it gives you low blood pressure. This has caused nearly every doctor and other health professional I've ever had to comment on my low blood pressure with absolute surprise because fat people aren't supposed to have low blood pressure. We're supposed to have high blood pressure that they can then use as a reason to tell us to lose weight. Instead, I always get sort of awkwardly praised for my low blood pressure. Never, once, did a single doctor (until the one who diagnosed my EDS) ever think that maybe it was a sign of something more seriously wrong. It was just praiseworthy. This is seriously effed up, and symbolic of how fat people are medically treated in this country.

**I also made another large batch of the Spring Roll filling from the recipe I posted a few posts back. I'm now out of curry powder and nearly out of cayenne. Time to order from Penzeys! (Penzeys is awesome. Highly recommend.)

Monday, June 29, 2020

What's Black and White and Inflamed All Over?†

I've never chronicled a flare up before, and it occurs to me that having a record is a reasonable idea, if for no other reason than the next time this happens I can go back and see when this time happened. I'm really bad at writing things down as they occur.* The other reason this seems worth doing is that I kept looking around online to find other reports of EDS flare ups and didn't uncover a whole lot. So I might as well add to what meager collection of info it out there for others to find.

This flare up started around June 10 with severe stomach pain. Like, I've-been-stabbed-in-the-stomach severity stomach pain. I usually take a low dose of omeprazole when this happens, but at the time I was visiting my parents and didn't have any. I took everything else they had. Rolaids, Tums, even some Zantac my father still had because he missed all the recall notices that flooded the internet a few months ago. Pepto Bismol. Nothing helped. Gasping pain so bad it woke me in the middle of the night and I thought about whether I'd need to go to the hospital this time. Eventually I got to the store and bought omeprazole, ripping the package open and swallowing a pill dry in the parking lot. It helped. I don't know why only this particular med helps, but I've stopped trying to reason with that kind of pain.
For the curious -- yes, I've had it checked out. I've been scoped and CT'd and examined from here to Sunday. There is nothing wrong. Nobody can see anything. They never can. I did, once, have an ulcer that was healed, but beyond that, there is no explanation for my symptoms.** Except, of course, that I have EDS and it does strange things to you.
A day or so later, my hands started to hurt.
Ten years ago, after my daughter was born, I developed "babywrist." The contortions I went through to keep using my hands led to golf and tennis elbow, and eventually a strained left shoulder. None of these ever healed fully, though I did regain use of my hands and they don't bother me often. My elbows and shoulder hurt nearly always. One of the hallmarks of Ehlers-Danlos Syndrome (hypermobility type) is that, once damaged, connective tissue just doesn't heal. So it's important to not get damaged in the first place, which is challenging when you want to have a life.
But now my hands were hurting again. Just a little. I thought it might be attributable to an overabundance of work with the pruning shears when I took out a bush in the back yard. That wasn't it, of course, but by the 20th or so, I was pulling out my old babywrist braces because they helped me remember to not try to do stupid things with my hands like turning doorknobs or unbuttoning my jeans.
By this time, everything hurt. Fingers, hips, knees, neck...everything. The plantar fasciitis in my left foot (it was my 5 year anniversary! Remember that thing about not healing?) was exquisite. The brace I wear for it at night caused numbness followed by wicked pins and needles, which was new. My skin hurt. The skin on my left arm where I wore the arm brace felt like I'd rubbed it with sandpaper and coated it with that feeling you get when you whack your funnybone. Every time I stood up I had to either sit back down, or pause where I stood till the dizziness passed and blackness cleared from my vision***.I started taking high doses of Celebrex to help with the inflammation, and full doses of omeprazole to help with the side effects of the Celebrex.
Even so, I spent every morning waiting for painful cramps to send me running to the bathroom where it felt like everything I'd ever eaten was leaving my body, along with half my insides. Fortunately, the exodus was usually done by noon, and after a rest, it didn't bother me much for the rest of the day. I was, however, hyper-sensitive to all the foods I can usually eat a little bit of without too much trouble. Not now. Even small amounts of dairy, or food-gums caused painful bloating.
By the 27th, I was a wreck. Sleeping hurt. Not sleeping hurt. Moving hurt. Baths helped, but there's only so much time you can spend in a bath tub.
Then, on the 28th, it started to let up.
Today is the 29th and I was able to turn the ignition on my car without using both hands. I'm still wearing braces on my arms, but the pain is receding. I have no idea why. It's still there, but it feels like maybe I'll see the back of this in a week or so.
I don't know what brought it on, or what is causing it to taper off.
I wish I knew.
I'm not looking forward to the next one.

*especially when it comes to putting things in the freezer. Like, every time I think "oh, I'll remember putting this in here. This was some memorable stuff." No, it wasn't. It's never memorable stuff. Three months later I'm looking at some frost- encrusted chunk of something, going "what the hell is this?"
Every. Time.

**If you're considering telling me it's all in my head, or I should change my diet, try yoga, exercise, breathing, gratitude, supplements, etc please feel free to keep your thoughts to yourself. I've heard and tried everything you might care to suggest.

*** My kids are so used to seeing this now they just wait for it, sans comment. They know what it means when I'm "out of spoons." In a way, I hate that this is "normal life" for them to see, but maybe it will end up with them being more aware of and compassionate towards people with disabilities, so it's not all bad.

†People with EDS are often called "zebras" since our issues are not the "horses" doctors are taught to suspect before moving on to more exotic diagnoses. The trouble with this, of course, is that many people with EDS aren't diagnosed till after having symptoms for years or decades, if at all. So the title is just a super funny joke for all those with EDS. You're welcome.

Monday, June 15, 2020

Just a Recipe (without all the fol-der-al first)

I don't think I've ever posted a recipe, but I'm posting this one so I don't forget it. I read several recipes on the internet and didn't find one that a) had all ingredients I could eat and b) had ingredients I had on hand and c) used flavorings I really liked so I put this one together. It turned out fabulous.

Rachel's Not-Really-Thai-Fried-Rice-Paper-Rolls
(low FODMAP recipe)

Ingredients
Rice paper wraps -- The square ones seem easier to use, but use whatever kind you like)
1 lb ground chicken*
Green onion, chopped (just the green bits, about 1/4 cup worth)
2 large carrots, shredded (reserve a small amount for garnish)
2 celery stalks, shredded (I put both into the shredder of the food processor together)
1/2 cup cooked Vermicelli rice noodles
1/2 - 3/4 tsp curry powder
1 tsp salt
1/4 tsp red pepper flakes (optional)
1/2 - 1 tsp Thai fish sauce
1/3 c crushed peanuts (reserve a small amount for garnish)
1/4 c fresh cilantro sprigs (reserve a small amount for garnish)
3 - 4 T garlic oil**
1/3 c rice wine/lime juice mixture (sort of a lime vinaigrette - this is to add some needed acidity. You could also use any sort of light vinaigrette you like)

Cook the rice noodles as directed on the package. Drain and set aside. I used a single packet of them and it was more than enough.

Fry the chicken in a large pan. Use a spatula to work the meat into little crumbles. Add in the onion, celery and carrot and fry until all the meat is thoroughly cooked through. Add in curry powder, salt, fish oil and pepper flakes. Stir together on low heat for a couple minutes. Adjust seasonings to taste.

While the meat mixture is cooking, prep the rice paper wraps. I put them one at a time onto a large plate on a wet paper towel, then spread more water over the top of the wrap and let it rest 2 - 3 minutes till it softened. To make things go faster, I had 2 plates going at once. They get very sticky.

In another large frying pan, heat the garlic oil on low heat, about level 3.

On a softened wrap, put about 2 T of the meat mixture in a line about 3 inches long, about an inch from one edge. Adjust according to the size of your wrap, and your filling preference. Lay some of the rice noodles on top of the mixture. My ratio was about 1/4 noodles, 3/4 mixture. Sprinkle with a layer of crushed peanuts and a sprig of cilantro. Roll the paper around the filling, tucking in the ends till you have a tube about 3 - 4 inches long. This takes a little practice.

Put the roll into the hot oil. Keep the heat low. If you cook too fast, the paper will split. Fry for about 5 - 6 minutes on a side, and turn over with tongs. You can add as many rolls to the pan as will fit, but don't let them touch each other as they will stick together.

I've read that you can't deep fry them or they'll just split, but I've never tried it. I've never tried air-frying them, either, but you probably could if you brushed them with oil first.

Once fried, pull from the pan with tongs and put onto a plate with paper towels to soak up extra grease.

Once plated, sprinkle with about 1 T of rice wine vinegar, and garnish with crushed peanuts, cilantro and a few carrot shreds.

Serve with a small cup of vinegar on the side for dipping. You can also use tiny amounts of hoisin sauce for dipping, too.

They don't really re-heat well, so don't make extras to save if you can help it. Re-heating in the oven might work. Microwave doesn't.

*You could probably use ground beef or pork, too. I've also seen recipes that added minced baby shrimp. The meat could entirely be your favorite mushroom, too, or possibly even crumbled tofu.

**Garlic oil - I use this instead of garlic because garlic contains fructans, which I cannot eat. To make garlic oil, heat a small bottle's-worth of oil on the stove in a pot. Add about 2 heaping tablespoons of chopped garlic. Cook till the garlic starts to brown. Strain the garlic out of the oil into a glass container. Allow to cool. Store in a labeled bottle. Never just put raw garlic into oil and use that. You could get food poisoning from it.

Tuesday, April 14, 2020

Phone-a-Friend in the Covid Era

We had a meeting today where we discussed whether using Zoom with students sufficiently protects student's information and if we'd get in trouble for using it. This is a valid question since I'm not entirely conversant with every aspect of FERPA laws that protect identifying students information from being shared with anyone outside of school.
This law, by the way, is a good idea and I'm happy to have it but, seriously? You want to stop having online meetings with students because then those students might be seen by someone not usually in the school or because....Why? All the people who might see the students are ones who could come into the school and see students at lunchtime, or as a "room mom" (Yes, those still exist and they're still moms, 90% of the time.) We have to be extremely careful about not posting work that could identify the child -- including via their handwriting* -- and these are mostly reasonable rules to have. (It is permissible, however, to have students grade each other's papers and shout out their grades for the whole class to hear, because humiliating a child is perfectly fine so long as the paper hasn't been collected yet.**)
That's not really what this post is about, though.
It's about our strange and rather bizarre desire to "protect" children by keeping them from ever talking to each other electronically.
It's absolutely forbidden for students to use Zoom to contact each other. And talk. Privately. Because they might get hurt! OMG! Someone could be preying on them! Yes, I suppose it's true that an adult could try to surreptitiously Zoom with them on an illicit school account. Trafficking and grooming and all that are a real thing. But preventing kids from ever having electronic access to their friends is not going to protect them from it.***
But my kid, in a video chat with her best friends she hasn't seen in a month aren't in danger. And that's what we're talking, with all seriousness, about trying to eliminate. Keeping kids from having conversations without an adult around.
Really?
You think, in reality, kids never have an unsupervised moment? There's no lunch time, no recess, no chat about anything but school during the school day? Or what about at home? Some kids do actually go outside and play with the neighborhood kids without adult supervision. Kids NEED to talk. They NEED to play games and argue about the rules, and they just freaking need time to be kids away from adults.
Right now we're in a place that nobody living knows. We're physically isolated and most of us adults are finding a lot of solace in the video connections we are making with others. We shouldn't be trying to keep it from our kids, too, in the name of keeping them safe. Few people have a landline phone anymore that enables kids to just pick up the phone and call a friend. We decry giving a kid a cell phone till 8th grade or later (and with some good reason, there) but it leaves them without easy ways to make connections in a time like this.
They need to see each other. They need to talk.
Let them.


*I defy most parents to ID'd their own 6 year old's handwriting, let alone anyone else's 6 year old's.

**I'm not kidding. This is allowed via a SCOTUS decision. Lazy, humiliating, ostracizing teaching practices are perfectly fine. I never want to be a principal, but if I were, this practice would be utterly banned in my school.

***Things like conversations, teaching kids openly about sex, sexual predators, relationships, and having a healthy involvement in their digital consumption is way more useful.

Sunday, March 29, 2020

Visiting Backyardia (One Star. Would not recommend.)

I spent some time in the yard today contemplating the horror that is our lawn and the backyard fence that is crooked as a dog's hind leg. This is what passes for a trip out these days. The front lawn. The back lawn. Fence inspection. These are things I need to do, granted, but when they're the high point of the day, well...
And I started thinking about the trip we aren't going to take this summer to celebrate our 15th anniversary. It was going to be a grand, multi-generational thing with my folks and other relatives and I was really looking forward to it, and now I'm almost positive it isn't going to happen, so hey, why not spend the money on a new fence or hiring someone to fix the lawn?
...

We could spend it on a cement trough, too, I suppose. Because that's the practical thing to do. Because there's not a need, really, to go visit a country where they don't talk in English and they don't even want to!* It's much more responsible to save the money, anyway.

I hate this.

I am just guessing here, too, but most, if not all the kids' summer camps will not be running. For the first year, ever, I got them signed up early for different camps and they were both so excited to go. But Dr. Fauci's "weeks," while better than "months" don't inspire confidence that it will be safe for my kids to go off to sleep away camp in June.

I do realize that this is a First World Problem of the grandest degree because there are folks out of work, and who don't know if, at the end of all this, they're going to be evicted because they got laid off and $1200 doesn't go all that far in most places. People don't know if there will even be jobs to go back to. Hospitals are overcrowding and there's not enough equipment. There's so much. So I know this is an irrelevant problem, but knowing that doesn't make me feel any better about it.

And then, of course, there's the real, underlying fear that in two months, I'll come back to read this and think "Oh my God, this is what you were worried about? This? This trivial, nothing thing?! What's wrong with you?" And I will be thinking that because the unimaginable has happened, and I am wanting to go back in time to shake myself for grieving such an unimportant loss as vacation or summer camp.

But that's where I am. Except right this moment DH is online for the first time playing a multiplayer dungeon crawl using Tabletop Simulator with his friends and it's actually working. And he's laughing. Little chuckles and big hearty guffaws that have been such a rare sound that I was startled by the first one. And I'm so grateful his friends insisted on trying this.

So maybe, in this moment, it's okay to grieve the tiny things in the same way we are grateful for the little things and not feel unworthy for any of it.

Be kind to yourself, friends.


*it's a reference to "Our Town." My mother will get it.