Food Stuff

One of the things I hear/read/am haunted by most as a person with chronic illness is the completely inaccurate thinking that changing my diet will change the status of my illnesses.  I mean... wait.   Maybe it's not completely inaccurate, because obviously diet does affect your overall health, and changing my diet could potentially kill me, so not inaccurate at all, I guess.  It's actually the thought by outsiders that changing my diet will CURE me where the inaccuracy lies.

First off, there are so many moving parts to my diet that abled people do not have to consider, that it's almost a completely different experience, eating. What do they have to do... pick a food and eat it? That is not how eating works, in my experience as a disabled person. 


And it starts with the very basics: Who has the energy to purchase and bring food into the house in the first place?  Not me.  If it's in-person shopping, 99% of the time, it's me sending someone out with a list of things, and having to be happy with whatever they come back with. (Which is usually about 75% of what I've asked for, often not exactly as I've requested, but you settle for what you can get - example: I'm allergic to certain kinds of fruit, and yet if I ask a carer to read labels and make sure that there's no pineapple in what they're buying, that doesn't always happen, so sometimes I wind up with food I can't eat.) I do a lot of my food shopping on apps or the internet, but here too, you have to settle for what you can get - the shoppers in the store decide what quality and cut of meat you get, or when the expiration date is (I have received meat on the sell-by date, for example, which means I have a limited amount of time for the meat to actually be useable).  They decide if your bananas are green, or yellow, or turning into brown.  All of the little choices you make in the supermarket are made for you, and you deal with what you get.  Shopping via app has literally kept me from starving, so the convenience of it can not be understated - someone brings the food to me, I don't have to carry anything heavy (I can't lift a package of bottled water on my very best day), and occasionally, they give me someone else's bag and I get to try something I never would have tried on my own (bc once the bag is in my kitchen, they can't take it back out), but there are still drawbacks.


That's just the simplest, first step of eating - having food available to eat.  And you can already see that there are layers of complications that a lot of abled people do not have to consider. 

Let's move on to dietary restrictions.  My own personal experience with disability and chronic illness has come with a huge list of food-related dos and don'ts, and, in talking to other disabled and chronically ill people, I have found that this is almost a universal experience.  I'm going to discuss maybe half of mine here, and I want you to just keep in mind as you're reading that I recently dislocated my jaw, so whatever fits into these basics? For a period of time also had to be nearly liquid.

• I have to monitor my blood sugar closely, which is complicated by frequent infections and sometimes in no way related to what I have previously eaten, but needs to influence what I eat next. 
• I need to drink upwards of a liter of water, every day, without fail, for my blood pressure. 
• I also need to eat a high sodium diet, which is the opposite of nearly every other person's dietary recommendations, and I have had to explain it to actual nutritionists more than once. 
• I am taking a medication that requires you to dilute it in water and drink it half an hour before eating, so I have to have the medication ready and plan out meals in advance enough so that I know 'I will be eating in a half hour'. 
• In the meantime, the medication makes me nauseous, so I feel like not eating basically every time I drink it. 
• I need to eat enough at each meal to take some heavy duty meds, because otherwise THEY will upset my stomach, sometimes causing vomiting, and having to start the whole cycle all over again. 
• I sometimes require rescue medication, which also requires food, even though (in the case of migraines or extreme pain), I am generally pretty nauseous when I need to take it, and that makes taking it nearly impossible.
• In addition, I have food allergies, food intolerances, and gastrointestinal issues that sometimes lead to me feeling full without having eaten anything in over 48 hours. 

I also deal with chronic pain, which makes cooking difficult, obviously, but also, in a less obvious way, makes eating difficult:  I am so used to tuning out the physical feelings of my body (because if I felt all the pain I feel, all the time, I would not still be alive, and one way I have found to cope is to shut down the things that feel too much), that 'normal' physical bodily stuff? Doesn't even register.  I don't remember the last time I was hungry, or what hungry even feels like.  I have to set timers on my phone so that I will drink the water I'm supposed to drink, because thirsty often doesn't register either.  I have had issues because I sometimes 'forget' to pee? Like I know it's a thing, and I feel it sometimes, but I can block it out, no problem.  I have learned, through years of hideously painful experience, that listening to my body is dangerous.  For my physical and mental health. 

So hungry? I don't know.  But does that girl scout cookie smell good? Yes: So I'mma eat it.  

Those are basic guidelines in which I have to then
1) Find the spoons to make a meal
2) Find the spoons to eat the meal

I haven't even mentioned the fact that a lot chronically ill/disabled people are caretakers or parents, and that means incorporating the needs and wants of OTHER PEOPLE into you meal planning as well.  Or that all of the "When I eat healthy, I can FEEL the difference" rhetoric is meaningless to a person who doesn't feel better, ever.  Nothing I eat makes me feel more tired, because I am already at 'exceeds human levels of tiredness' tired.  Nothing I eat ever makes me feel more energized, less in constant pain, more of whatever you are feeling that you think you need to pass on the good news about.  It is basic fuel, it somehow manages to squeak through all the restrictions I've listed, and sometimes it tastes good, and other times it fits in my mouth & I can swallow it without having to chew it more than once, and that's the level of happiness I manage to equate with what I'm eating. 

Given all those givens, if I sometimes resort to eating a sleeve of saltines, slathered in peanut butter, the LAST THING I need is for someone to come along and try to able-splain to me the horrors and evils of gluten.  I don't need anybody to explain to me that pizza isn't actually a vegetable, on a day when ordering a pizza is the only thing I have the spoons to do.  I don't need a random stranger, a doctor, a sister or you to attempt to convert me to a vegan/keto/supercalileavemethefuck alone diet plan, by suggesting that they know more about what I need physically than I do. 

Here's a hint: Ya don't.  I have lived with these restrictions (and a lot more that I haven't gone into) for this long, and managed to keep myself alive. 

When you're fighting for survival on a daily basis, sometimes remembering to count your goddamn calories is above and beyond what you are capable of doing, and that's just going to have to be ok with everybody, because I'm sick of defending it. 

It's not your business, honestly.  And if your diet works for you: Great.  So happy for you.  But you do NOT know what it's like to live in this disabled body, so I'm gonna need you to shut the hell up. 

Not an April Fool's Joke

Can we talk?  I know we can: it's why I haven't shuttered this whole place down, even though it has been awfully ghost town-ish lately.  As usual, the less I am saying here, the more cluttered up my thinking becomes, the harder it gets to say anything at all, the more thoughts bounce around in my brain, and the vicious cycle continues.  There's a lot I'm not saying to anybody - not even to myself - lately, and that's got to stop. So I'm going to plug back in here, see if sweeping some of this stuff out into the open doesn't help me free up some space in my skull for quiet and peacefulness.  It's a hope, anyways.

First off, how was everybody's Easter?  Ours was good; no high drama or hysterics, just two kids with too much sugar and seven adults with not nearly enough - By the time all the grown-ups were looking to nap, the kids were plowing through their Easter baskets out of sheer boredom, and when we finally corralled enough people into playing a game, it was a sloppy, silly mess.  It's a good thing Catchphrase doesn't require a lot of firing brain cells or strict compliance. 

Speaking of compliance: I have to get a handle on my low-carb diet, which, since September, has taken a real beating.  All the weight I lost last summer has meandered back on, which I'm not as happy about as I was about it meandering off.  But more importantly, my liver and diabetes numbers are in trouble again and need refixing.  Self-care, NTE: you need to practice it.  So, I'm off for breakfast (which I find hard to do low-carb, since I don't eat eggs), and I'll be back before you know it. 


Ok; good start.  Random & short, just like always :)  Talk to you soon!

Happy Pie Day!

Even though we'll be smaller in numbers this year, that's no reason to make less pies, is it?  (She says, knowing that she'll be eating pie for breakfast all next week.) 

I had a piece of one of these for breakfast, and I'm considering having another piece to take my last round of meds. Pie is totally a health food: FRUIT (or VEGETABLE, depending)! EGGS! SPICES! ~ Good for you! (If you have ever seen Bill Cosby: Himself, then you should have the song 'Dad is great, Give us the chocolate cake!' running through your head right about now, like I do.) Anyways, to repeat myself, YUM.

I'm working on it...

Got a couple of more in-depth posts in the works, but in the meantime, I thought I'd report back on my no-roll pie crust experiment .  I threw it together with some frozen strawberries and blackberries, a little oatmeal/brown sugar crumble, and am eating it for dessert right now.  Grades are good - it's fairly sweet, but very flaky and hands down the easiest pie crust I've ever made.  I'm not sure how I'm going to adapt the blueberry pie, since that tends to require a top crust (and this would not be pretty enough for that, I don't think), but I'm definitely using it for Thanksgiving pies.  Thumbs up, for sure. 

If you're interested, the recipe I used is:

In a medium bowl, whisk together:

     1 1/2 c flour

     3/4 tsp salt

     2 Tbsp sugar

     1/8 tsp baking powder

With your fingers, work in:

     1/4 c (57g) frozen butter, grated

     1 Tbsp plain cream cheese, room temp

In a small bowl, whisk together:

     1/4 c oil

     2 Tbsp cold milk

Add the liquid to the larger bowl and mix with a fork until all the floury bits are wet.  It will be shaggy – that's okay.

Dump the dough into a pie dish and press it into the bottom and sides of the dish.  Try to get it as even as possible.  Freeze the dough in the dish while you prepare the filling, or for at least one hour before blind baking.

To blind bake, set the oven to 350F/175C and line the dough with foil.  Weigh the foil down with baking beans or uncooked rice (don't eat the rice afterwards) and bake for 10 minutes.  Remove the foil and weights and bake for a further 4-6 minutes uncovered, until golden brown.


And it was originally found here . The best part was the idea of grating the frozen butter, rather than trying to cut it, mix it, refreeze it, wait, then cut it up again.  Grating: why didn't I think of this sooner???    Anyways: Yum.  Off to finish dessert now. 

Late in the day, again

I keep putting it off and pushing it back - "Oh, I'll write at 7 o'clock, when this show is over, at 9 o'clock..." And somehow now it is after 10 o'clock, and I haven't put two words together.  I know you all are shocked at my procrastination skills. 

I do have good news to report, however: Mom is home from the hospital, and, while pretty exhausted (anyone who thinks a hospital stay is restful and recuperative has obviously never had one), she's doing pretty well.  Got some stuff to follow up with in the next couple of weeks, but definitely a lot better than she was. (She ate food.  Voluntarily.  Twice today that I know of. It has been weeks since that happened, so that's a big step forward.)

Also, I didn't procrastinate all day: I did in fact make cookies today.  Hooray for following through on something.  I made two batches of cookies, froze half and baked half  - because we honestly don't need five dozen cookies on just any regular day, like today, and because there's nothing better than knowing that all I have to do is cut a chunk of the frozen batch and I can have a couple of warm cookies any old time I please.  Plus: I am already there doing it, all of the ingredients are out, I might as well throw it together.  It doesn't take very long, the second batch, and I can do it while I'm waiting to pull the first round out of the oven. 

I also attempted to make a no-roll pie crust, and froze that as well.  I'm hoping for homemade pie crusts for my Thanksgiving pies this year, and meant to start two months ago, trying to settle on a recipe I like - and then things (my body, other people's bodies, the world at large) kept going wrong, so here I am just starting.  I am not a huge fan of the crust part of pie, for some reason, and pie dough rolling is nearly impossible for me, strength-wise, so it's hard to make my own.  I usually resort to the store bought, but I know it's not the best ever.  (And I like to make best ever pies, so it's a conundrum.)  I found a recipe on the internet for no-roll crust, and I'm going to see how that turns out.  It was wicked easy to make, but the recipe doesn't say anything about freezing it, long term, so I'm sure there will have to be a practice run on the pies before Thanksgiving rolls around.  (And I am not even thinking about the fact that that only gives me two weeks.  IGNORE.) 

Still, although I am currently sore as all hell, I love baking, and wish it was something I could do more often.  It takes a lot out of me, partly because we don't have a table at the right height for me to cook on, so I have to hop up and down from the counter in order to see into the mixer and make sure I'm doing things right.  (Oh, standing: why are you so difficult?)  And the hopping is exhausting, but I haven't figured out a better way yet.  (Recently, they put a long table in the kitchen for me to try, but someone must not have liked it there because before I even got a chance to try it, it was quickly moved back into the dining room.  That's ok, because I think it is still too high, but I kind of wish I could've tried it first.)  But hopping and soreness aside, I do have a bunch of mini-chocolate chip or butterscotch cookies to nibble on for my snack tonight, and that certainly tips the scales in favor of baking, however I accomplish it.

Pro tip: I realize that some of you probably already know about this, but it is my favorite cookie-related tip in the universe, so I'm passing it along anyways.  When you're storing your cookies, like in a tupperware container or something (we use old takeout containers: reusing for the win!), put a piece of bread in there with the cookies, to keep them soft and moist.  For whatever reason (and I know I am a geek, but I am not a science geek, so I can't explain it), the bread will get hard and stale, but the cookies will not.  Change the piece of bread every couple of days - if your cookies last that long - and the cookies will stay nice and fresh longer, which comes in handy if you are mailing baked goods as well.  (And the bread you can use for homemade croutons, if that appeals to you, but I don't like croutons, so I just toss it.) 

Time for that snack I was talking about... Thanks for all the well wishes for my mom; they are much appreciated.