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chronic illness

Chronic Illness. It is what it is.

 

ci

People I know have more or less knowledge about the unexpected changes in my life these last few years. For whatever reason, today, I feel the need to put it out there. Or some of it, anyway. So here goes.

No. I’m not going to tell you my diagnoses.

  • They don’t say much about the nature of my experience. My specific symptoms aren’t the important thing.
  • They do lead to questions I don’t want to answer. My specific symptoms aren’t the important things.

Yes. I’ve tried other doctors.

  • Umteen of them to be specific.
  • “Um” = “more than I can enumerate”
  • “Teen” = “more than 10”

True. There are many things I can’t/don’t do anymore.

  • Many of them used to be easy
  • Many of them used to be fun
  • Some of them used to be things I considered necessary

Yes. The things I say I “can’t” do are different on different days.

  • If I don’t do something you expect, or think I should, I have reasons.
  • If I manage something you don’t expect, I have reasons. 
  • Eventually, I’ll probably write what I can about those reasons.

No. I haven’t just given up, and allowed myself to go into a downhill slide.

  • I’m accepting my life the way it is now.
  • It would help me if you did, too.

Yes. There are in fact many wonderful things I can still do. 

  • Including some really huge things
  • Many of these are things a lot of folks with chronic illnesses can’t do.
  • Soon, I’ll probably make a list.

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chronic illness

This

Doctors ask questions I have no answers to. I’ve seen brochures, and on websites, advice about how to talk to doctors about your pain. The advice will offer a series of questions to answer. Is it like this? Is it like that? The answer is “no.” Or… “I don’t know.”

But here it is. Not in words, but in a picture.

The artist is named Trina Merry. The photo is not a painting of a model. She is a real person, painted to visualize the words she used to describe her own pain. The statement this woman makes with this pose… it’s me. This is just what I look like when it’s bad.

The artist painted people base on their descriptions. Those people came up with words. I can see, watching the videos, that wasn’t easy. I don’t think I could do what they’ve done. But a few of those words, here and there, feel so familiar, I’d like to borrow them.

It makes me feel uneasy, and imbalanced, and alone. My daily activities are affected… Just because you can’t see it, doesn’t mean it’s not there.

Kristen — Los Angeles, CA

The pain winds up reducing my ability to think cognitively… fighting it all the time is draining.

Tom — Los Angeles, California

Chronic pain has an effect with my relationships, because I’m not the same person I used to be. I don’t have the energy, I don’t have the stamina… It can be very lonely when you have chronic pain. I can’t go to social events like I used to, because it’s with you all the time… pain is fatiguing. It’s like carrying a big old backpack full of rocks on your back all the time.

Cathy — Los Angeles, California

It just kind of flattens you. It’s something you can’t explain fully to anybody….

It took me a long time to accept where I am. Acceptance is necessary, so the sooner you can get to acceptance, the better…

I have some power over things, and I can choose to do certain things or not do them and that makes a difference.

Patricia — Berkeley Heights, NJ

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Things I can (still) do

Key  to reading the list:
* Almost means something like 9 times out of 10
* Nearly means for sure more than 95% of the time.
* Immense is bigger than huge


These things are HUGE:

  • I can work. With good pay and benefits, even

I’m very lucky that my employer lets me work from home every work day. They also allow me to work 4 days a week. I almost never have to work more than 2 days in a row before I get a rest day.

I have a comfortable lifestyle without needing someone else to support me.I can feed a teen-aged athlete. I can provide him with rather pricey training that’s very important to him.

  • I can do stairs. I live in a vertical house, so this means I get a significant amount of activity every week, and nearly ever day.

Nearly every single evening I climb a flight of stairs to go to bed. And go back down the stairs the next morning. Most evenings, I go down a flight of stairs to watch T.V. (And, guess what? back up when I’m done watching.

Almost every week I go up and down both flights of stairs at least twice to do laundry. Sometimes I can do two loads on the same day. Some weeks I do three loads.


These things are wonderful:

  • I can get out of bed, even when I’ve been sleeping for hours, and make it to the bathroom without falling. Every time.
  • I can walk outside for a few minutes many days. I walk more than a few minutes to do grocery shopping nearly every week.
    I can cook. I rarely go a month without cooking a dinner for my family. I sometimes make breakfast more often than that, and sometimes for more than just my immediate family.
  • I can drive if I need to.
  • I can have a holiday meal at my home, as long as I scale down the cooking and have a rest day afterwards.
  • I can get up from sitting on the floor (as long as I don’t do it very frequently.)
  • I can laugh
  • I can crochet!!!!!

These things are immense:
 I can do immense things if I have to.

Yes, it means I have to make compromises in the quality of some of the other things I do, including my paying job. But I can choose to do that, as long as it’s not all the time.

  • I did a very respectable job of helping my daughter plan her wedding, and in general playing mother-of-the-bride.

I even danced at the wedding
I was able to work with only 2 rest days after the wedding

  • I made it to every single post-season game of my son’s high school soccer team.

Sitting on a bench with no back for 2 hours is a bit tiring for anyone.  There were many games in a short period of time (they made it all the way to State. As everyone I ever talk to already knows.) Most of these games ended after my usual bed time. Most of these games were more than a 15 minute drive from my home. It was cold (which really does take more energy, both to sit through as well as prepare for.) I often had to work the day after a game.

but I did it.

 

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Crusty

Not perfect yet. But this is the most recent iteration of quiche crust, and it’s pretty good.

2 cups almond flour
2 medium garlic cloves, finely minced
½ teaspoon dried thyme (or ½ teasp dried thyme leaves, or 1 teasp fresh thyme)
¼ teaspoon salt
¼ teaspoon pepper
¼ cup olive oil
2 tbsp clarified butter, melted*
1 tbsp water
1 egg yolk (I save the white for the filling.)

Preheat to 400.
Grease a pie pan with olive oil or cooking spray. (I use a 10 inch pan, but they’re hard to fine. A 9 inch pan works fine, too, of course.)

In a mixing bowl, stir together the almond meal, garlic, thyme, salt and pepper.

Combine the olive oil, butter, water, and egg yolk. Stir until the mixture is thoroughly combined.

Press the dough into your prepared pan until it is evenly
dispersed across the bottom and at least 1¼ inch up the sides.
Bake about 15 minutes. It doesn’t have to be fully baked. You’re going to bake a quiche in it, anyway.

*If you don’t want to use any dairy at all, or just want a softer crust, you can sub olive oil for the butter. It’s good that way, too.

If you like it flakier, you can add a ¼ teaspoon baking powder (and make sure you use the butter, or some solid-ish shortening, like coconut oil or crisco.)

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Red hats… or something.

I haven’t the slightest idea what made me start thinking about the “Red Hat Society”. Is that still a thing? I bet it is.

I always thought it was so odd. There seems to be a theme based on Jenny Joseph’s poem. Which, as I understood it, was about how great it was going to be to stop feeling the need to conform.

When I am an old woman I shall wear purple
With a red hat that doesn’t go, and doesn’t suit me,

So they all get together and wear whatever-they-want purple outfits and red hats. If you don’t wear that, you won’t fit in. Oh, and typically, the red hats have some sort of purple trim. After all, they’re made for the Red Hat ladies, and they should go with the dresses, right? Oooookay.

I’m unlikely to ever belong to a Red Hat Society. So here’s my version of the poem:

When I am an old woman I shall wear whatever-the-fuck-I-want.
With a side of don’t-give-a-shit about bras or shaved legs.
And I shall spend all my money on yarn, and more yarn.

And butter.
And I will stay in the house by myself and crochet all the time.
Or go somewhere and crochet. Whichever.

Hmmm… I think I must already be old.
Ain’t it great? 

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Why do people put such stupid (mis)information all over the web?

Yeah, I think it’s time for a rant.

I’ve been having a conversation with myself about even though it’s great that you can find so much wonderful information on the web, it’s even more amazing how much truly bad stuff there is out there. It takes some skill to know what you should believe, and it’s kind of sad how many people are spreading, and believing, bad information. The thing that set me off today isn’t even political.

If you didn’t know, I’ve been having GI problems for about two and a half years. I don’t intend to go into that journey (Odyssey?) now. The key bit at the moment is that right now I’m trying to go very low in carbs, and mostly cut out dairy.

So… butter. Well, I’ve recently learned about clarified butter, looking for info on someone else’s issues. If it’s just the fat, then it doesn’t have the part of dairy I’m avoiding. Yeah! So I was just looking on the internet about how to clarify butter, and my search turned up a really ridiculous article about ghee not being safe if you’re casein sensitive. I’m not saying it is, necessarily, always safe. I am saying the article is ridiculous.

http://www.drnicoledinezza.com/doctor-dinezzas-blog/why-ghee-is-not-safe-if-you-are-casein-intolerantsensitive

I’ll quote a bit here:

I recently (July 2018) reached out to some popular ghee companies and have found that the amount of casein in commercial ghee varies widely. … some are outrageously high in casein (20,000 PPM).

Umm… I don’t know who said their ghee had 20,000 ppm of casein, or how that mistake was made, but anyone who applied just a milligram of common sense would see right away that this number had to be a mistake. (By “who”, I mean what specific person. The blog author does say it’s Organic Valley.)  Because here’s the thing. 20,000 ppm is 2%. In regular butter (that hasn’t had the solids removed), the milk solids content is 1-2% in total. I don’t know how much of that is casein (vs. whey and carbohydrates.) But I do know that there are other components to the solids, and that 2% is the very high side of estimates. Typically, it’s closer to 1% combined. You can’t removed the milk solids and leave behind more casein than was there to begin with. She didn’t just mention that in passing, either. She makes a really big deal of what a crazy high number it is:

You wouldn’t see a Celiac touching a 20,000 PPM gluten waffle with a ten foot pole.

Without ever going “Hey, that doesn’t sound right. I’d better look into it before publishing this (mis)information to people who are likely to believe it, because I have the title “doctor” in front of my name.”

(P.S. The thing about Celiac disease is a non sequitur, in case you didn’t notice.)

So all right. The company has given bad information about it. Don’t trust them. But don’t make a big deal out of something that obviously isn’t true!

And she also doesn’t trust do-it-yourself. Which I can see, because we aren’t going to scientifically measure at home. But she also misrepresents what do-it-yourself actually is. Why? That makes no sense to me at all.

Even the Institute for Functional Medicine (IFM) teaches physicians how to make homemade ghee in their GI class so that they may teach their patients to do so….

I’ve seen people make ghee before– you simmer the butter until the proteins foam at the top, then you scoop off the foam with what looks like a wonton scooper or a spoon. That’s a solid “nope” for me.

promise you, when physicians are taught how to make it for people with food sensitivities, they don’t just simmer the butter until the proteins foam at the top, then scoop off the foam. But people more commonly make clarified butter or ghee because it’s good to cook with. Not because they’re worried about food sensitivities.

And when it comes down to it, that’s not what the woman in the linked video did, either. She scooped off the foam at the top (which was basically whey), and left other solids stuck to the bottom of the pan (that part would have been mainly casein). So a combination of scooping and pouring got almost all of the milk solids out. And after that, she filtered, to get out nearly all of the rest.

So I made clarified butter today. I filtered twice, each time through 2 layers of T-shirt. (Some instructions say use cheese cloth, but the holes in cheese cloth really are too big. Why bother filtering if that’s all you’re going to do?) It’s delicious. I stirred it into a tablespoon of peanut butter (1 gram of sugar there), and mixed in some finely chopped unsweetened chocolate. I’m going to cook an egg in it tomorrow. I’m happy. (Now that I got that off my chest.)

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Pro tip (about Sharpie ink)

Well, okay, it’s actually an amateur tip. There’s no way anyone’s ever going to pay me to use Sharpies. So here it is. How to clean Sharpie ink off your plastic sign:

 Cheap Bicycle Tire Glue         

Learning this was a happy accident. Kind of like penicillin. (Except for the miracle-drug-that-saved-millions-of-lives part. But other than that, it was like discovering penicillin.)

Here’s what happened. The glue was not thick and tacky, as one might expect from rubber cement. It was thin and watery. glueitcleanIt came shooting out of the tube when I squeezed.  Glue everywhere! On the sign, on the tablecloth, you get the idea. I grabbed a towel to the wipe up the excess, and guess what? INK everywhere! This stuff dissolves Sharpie ink, and it doesn’t melt my plastic. This made me sooo happy. And it didn’t even take me all the long to peal off my patch, get to work erasing ink blotches, and finish erasing the existed smudges and all the resulting smudges from using the glue.

In case you can’t make it out from the picture, it’s “Rubber Glue” from “Bicycle Works”.

And the results, if I do say so myself, are pretty spectacular.  Notice how there’s no patch?

SignFinal
Now, I just need to take it outside. One step at a time.

 

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Four down, 26 to go…

Or, maybe it’s going to be more than that. Now that I’ve put the four together and looked at them… of course there are things I want to change.

Now here’s the boring part. Don’t bother to read. It really will be boring. Just look at the picture and be awed by my talent. Or leave a comment with color scheme preferences/suggestions. (Yeah, I know that’s not gonna happen. But I can try.)

Laying them out on my bed was a good thing to do, since they’re going to make up my bedspread. Seeing them in the room helped me decide what I liked best, and I was a little surprised. The 2 on the left are winners. They’re not the ones I expected to prefer. (Those two also look better in black and white than the others. I checked. Because whether a thing looks better in B/W tells you something. I’m pretty sure.)

I didn’t know whether I was going to like the yellow on the outside of the corner motif (lower right.) Now I know. I don’t like it one bit. What was I thinking, blocking it without looking it over and deciding on that first? It wouldn’t have been so hard to undo just that part. But there’s little doubt I will pull that out, save the circle, and redo the corners and border.

Also, I’m  not thrilled about the light yellow border around the squares with the lighter color schemes. I do think I’d like it a lot around the other squares. (I’m not thrilled with the coral around those ones, either.) I crochets samples of a bunch of different border colors. The one I like best on its’ own was the mint green. But that’s also the color of the very outside of all the corner motifs. (Except, of course, the yellow one that I’m going to redo.) I think I rejected the mint for a reason.

will have all the color decisions made really soon. Really I will. And the stitch decisions are already set in stone. I’ve done too much work to change that. (Until I do the next one… maybe in another 10 years.) So the rest of it will go much faster. It might even get done in less than 2 years.

Meanwhile, the sign’s coming along. I mean, it looks pretty good sitting on my chair. But I think it needs just one more thing… what could that be… I know there’s something…signchair

Hmmm… A signpost, maybe? (And a trim off the right hand side. Yes, I see that.) But then I might just have to work up the courage to go out and sign-carry.

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When a crafter decides to make a sign (clean version)

cleansign

Very clean. I know, because I spent a half hour cleaning it last night before taking this photo. I looked at the clock, and weirdly, it was time to go to bed, and I wasn’t anywhere near finished yet. (Huh? What? For sure I was going to have this done and cleaned up before bed time.)  There wasn’t an inch of table clear. (There’s a reason I’m not showing the explicit version.) I need to clean it up — I really like people to be able to eat at the table if they want to. (The plastic shreds all over the rug? No problem. No one’s going to be eating off the rug. I hope. Well, who cares? They’re not going to ruin my sign with their food by eating off the floor, are they?)

So I was a little late getting to bed, and the sign is, well, not quite finished. There’s a reason this happened. It’s the crafter thing (I blame my mother.) It’s not possible to just draw words on a sign. The words have to be just right. I have to experiment with the colors, sizes, and placement of the letters. Plus I can’t draw (sshhh… don’t tell anyone.) But I have discovered this great way to use letter-stickers even though they’re too small. I can make a nice, thick border around them, and then peel the stickers off, so there’s a high-contrast white area of perfectly formed letter inside. Am I clever, or what?

Now I’ve got it all worked out, and the sign material cut, and whoops! This plasticky stuff does not respond to Sharpies at all the way the stuff I was practicing on did. The colors are different. It smudges like crazy. The ink pools up in strange ways.

But okay, I can work with it. In fact… yes! I can use the yellow letter-stickers that I thought would be invisible against the white background. Hah! This is so great. I love the yellow. I can cover the marker bleeds, and use the yellow stickers. Yeah, me!

Oh crap. A really big BLACK smudge. Yuck. And there’s no getting it off. Because it’s Sharpie. You can’t get it off anything. Well, not unless you use something that will melt the plastic sign material. Don’t we have whiteout somewhere? No? Really?!?

Huh.

Ah-hah! I know. I have all this white sticker-paper from the letter-sticker sheets. I can cover that smudge. Don’t worry. It only took 4 tries to cut out a big enough sticker. I swear that smudge just kept growing. Even though I gave it time to dry, and washed my hands before messing with it. The smudge grew anyway. Really.

Hmmm. The yellow letters are great, but… the letters that were supposed to be red, white and blue can’t be made with yellow letters. I need white. (No, I can’t just draw them by hand. That’s why I bought all the stickers. Duh.) Hmmm… I might have a sheet of white craft foam left. Yes! A sheet and a half, almost. And yes, the marker colors look normal, and they don’t smudge. I can make letters on the foam, and cut out the foam letters and glue them on the sign. This will be so cool!

All right, so I have a plan. But before I make more letters of that size… well, I’d better make sure the words I have can be read from a reasonable distance. I mean if no one can read them, what’s the point. All right. Let’s check it out.

Oh.  Well.  The yellow letter stickers aren’t really working out so well. Hmmm. I can fix this. I know I can. Yes, that’s better. Blue… green… I can read some of them now. But the S, and that E… Oh. I know. Put the yellow back on the S. It needs the contrast. One yellow letter will be okay. And I can extend the ends of the E with cut-off bits of an I sticker. Yes, that’s not bad at all. It’s readable. More or less. It doesn’t look great, but don’t worry. I can figure out a way to fix that part later. Until then, it’ll be usable.

So here we are. A couple more evenings to work at it, and I think I’ll have a sign. Cross your fingers for me.

 

P.S. The reason I had tome to actually write today was I somehow managed to get on the train without a crochet hook in my backpack.

 

 

 

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Today it’s crochet.

This thing happened to me. I saw a crochet pattern on facebook. It was lovely. But expensive. They kept showing it to me. Over and over. Because that’s how FB ads are. So guess what? I caved. (What a surprise.) And here’s what I mean by expensive: It’s an “of the month” club. Yes, I did. And not even the usual one… where you really can “cancel at any time.” If I want to finish the afghan, guess what? I have to keep buying them. For like a year.

And guess what, too? It’s beautiful. Take a look. (See why I got sucked in?)

afghan-completed

That’s their picture, of course. But guess what? Mine is going to be even better. Because I’m not a beginner, and I can change bits I’m not in love with. Which makes it more fun, too. I get in a bit of my kind of creativity. I suck at writing patterns. But I’m good at editing 🙂

I’m not completely in love with the colors, but they’re pretty nice for neutrals . And hey, I can foist them off on anyone, and it won’t clash with their decor. Someone I know must need an afghan. Probably.

So even after goggling at my credit card bill, I’ve decided it’s completely worth it. Let’s face it — I’m going to spend a bunch of money on yarn, anyway. So the yarn that comes with the kit takes the edge off. I love that yarn, BTW. Soft, easy to work with, washable. And, I don’t have to go to the store and pick it out.

The pattern booklets are quite good: nice paper, nice photos. And since I’m buying something that’s actually published, on real paper, I can loan it like a book. Someone will want to borrow it. For sure. And then there are the videos. Of the 13 squares (well, 13 types — I’m doing each of them twice), there have been two stitches I didn’t quite understand from the pattern booklet. The video is very good. Completely cleared it up.

know. I sound like a shill. But I’m not. I’m just defending my overpriced purchase.

It’s a great project a beginner, if they have the patience for something this large. First square is a thousand single crochets (just like the usual first washcloth.) Second square is.. well, I’ll bet you can guess. I have high hopes that my sort-of-stepdaughter will want to do this. But I’ll talk about that, later. If I’m going to write about her, I should give her a chance to read it, and make sure it’s okay with her.

I have tons more to say about this long-running project. But later. Before I spend all day writing this 😀