I Saved a Bird!

Yup! We had a bird get into the porch today.
I was running outside to meet Awesome guy ‘cuz he ran to the pharmacy for me, and as I’m shutting the kitchen door...
THWACK!!! THUD!!! THUMP THUMP *rustle rustle* WHOOSH!!! THUNK.

And then like a potato canon at an astronomy convention, a juvenile robin—under the influence of some fermented elderberries, no doubt (and I’m talk’n like some good shit, yo!)—shot up in a plume of down, and  proceeded  to whack into various things.

So, I left the outside door open and went to grab MY drugs from Awesome guy, who was waiting in the driveway for me. We talked for a few minutes and then I wobbled back to the porch.

The robin was still there, and had wedged itself between a picture frame and the windowsill in ways that defied how living things should bend; much like a toddler. I made my way inside, set down the goods, slapped on a pair of nitrile gloves (er’body’s got ‘em now these days...), and grabbed the big ‘ol bug net.

After moving a few things out of the way to get to the far window—and some cheerleading from my Significant artist—, I scooped up the  undoubtably concussed avian with the bug net. It took a couple tries to get the critter into a position where I could safely support it with my hands, but we got there.

The bird appeared un injured and healthy, so I walked it to the porch steps, and then...whooosh!!!
Off it went :)

The Eyes Have it...

So, I had an additional visit with Dr.Eyeballs yesterday. Don’t worry, I can’t see any worse than I normally can. He just wanted to run a test that was doable in office that no one’s tried yet.
Unfortunately, we weren’t able to get all the data needed. However, we went over some names of folks for TMJ and eyeball/brain stuff and he put through a referral for me to another eyeball guy.

And, it turns out Dr.Eyeballs knows about my brain being fucked up, and how the medical community is split on the matter and doesn’t know much either. Which sucks, since his answers were the most concise, given how rare and variable the condition is.

Unfortunately, he’s just an eyeball dude and I have a  menagerie of zebras

OMG, TMJ!

Yes, it’s been a while...and yes, there’s a lot happening in the world. But, I’m not gonna talk about any of that; not because—frankly, we’re sick of hearing about it all—but because it’s my feck’n blog and I’m gonna talk about baby food, damnit!

That’s right! The world’s gone to shit, and imma talk about food baby! Uh, I mean...baby food...
‘How-come-why-for’, you ask?
Cuz my mum reads my blog, and TMJ doesn’t go away—‘Hello! This is your Ehlers-Danlos speaking! I’m here with your arthritis in tow. We’d like to inform you that your POTS and migraines are in cahoots with us too (gee, thanks)! However, Incase you didn’t get the memo, we’d like you to know that the evil master mind is has been in your head this whole time!
Yours,
- Leukoencephalopathy with Vanishing White Matter’

Fuck.My.Brain.  This dx just makes nutrition EVEN more important! Which, I had no idea was possible. So, what does one ‘eat’ when you can’t eat?

•Baby cereal!!!!
I LOVE Gerber rice baby cereal. I just mix it with water to the consistency that I can handle (from ‘mashed potato’ to ‘straw slurpable’), and I’m good to go

•V8
Great for POTS, high in sodium

•Instant mashed potatoes
Add broth/bullion for extra sodium, ‘butta’ for calories, soy milk for protein

•Broth, veggie soup, tomato soup
Add soy milk

•Pudding
Add soy milk or use tofu

•Baby food
Get the wee jars/pre made stuff, or make your own. Canned veg work fine

•Avocados
•Soy milk
•Tofu
•Gurt (soy, cow, whatever)
•Keifier (they do make a vegan one—coconut or soy I think)
•Açaí juice (there is one brand that’s betterer—might be Sambazon, not sure. I’ll definitely post the better brand) Great for mixing chalky protein powder

Those are just some ideas. If you can do Ensure, Vigor Aide, or Boost, those are good options too. There’s a host of vegan (and not) protein shakes, supplements, smoothies, and meal replacements out there. So, you’re not limited even with dietary restrictions. I’ve made my own blend with NOW (forgot if that’s the yellow pea or the brown rice flour one—but you need BOTH if you can do rice and pea flour). Svelte is another great vegan option that has a flavour or two I can have. Happy slurping!

Stick ‘em up!

At this point, you may have heard of the new ‘miracle’ drug, Aimovig. It’s a new (ish) injectable for migraines. I think at this point, there are three on the market. But anywho, back to Aimovig. I’m set for my first injection on 3/5/19, and Botox at point after that. We’ll see how that goes.

The reason everyone is so excited about stabbing people in the leg (or belly, they give you options) with this stuff is because of the low side effect profile and high success rate in populations that have either failed Botox, aren’t able to to take other preventatives, or don’t find relief from using abortive medications like triptans.

On another note, have I mentioned how great this neurologist office is? New Neuro has agreed to redo ‘the seizure test’....with music! Musicogenic seizures are very real, and I didn’t even have to fight them on my wacky idea! This comes on the heels of me collapsing, bonking my head on the rabbit cage, and peeing on my new boyfriend’s floor. In the past while assembling a burger (Gardien brand if you’re curious), I went through a card table and couldn’t find the other burger I had waiting to assemble. I thought that I had just flung it somewhere, but on further inspection discovered that my assembled burger was actually the one missing. Never found the stupid thing. After that, I burrowed in my mummy bag for a day or so ‘cuz I was all droopy. There’s been many incidents that seem as though they could have been seizures over the years, but I’m totally fine with flashing lights and the tests never come back with anything, but I DO react to music.

New boyfriend miss read ‘seizures test’ as ‘seizure FEST’, and justified his brain’s faux pas by saying that music naturally accompanied a festival.

In memory of/ it’s been awhile

To state the obvious, it has indeed been a bit since my last post. I think I’ve been through a few more rounds of Botox since then, but most importantly I’d like to talk about my buns...the furry four-legged kind.

Since I don’t know which posts have been gobbled by net goblins, I’ll start with my new addition: Francis. Technically, her full name is Francis DiProvisio, or ‘Francis of providence’. She was found in the middle of the road by a buddy of mine that’s a truck driver. This beautiful, sweet ball of love and fluff (she’s a big girl) was clearly dumped just before my friend found her on his truck route in the middle of the night. She was clean and in good shape— teeth aligned and worn properly, clipped nails, and well groomed fur, and in an area where it was clear she hadn’t escaped from, not to mention the survival rate of  domesticated rabbits in the wild is next to nothing.

She was most certainly abandoned just before being found, hence her name. Bless my insomnia, cuz I dunno if anyone else would have answered the phone at such an oddball hour. Truck buddy had called me knowing that I’m experienced with rabbits and that I’d most likely be awake.

That was back in August, and I’ve had her ever since. Fran-Fran is a rare cuddle bunny and just wants you to hold her ALL DAY...seriously. Where Voltaire would put her head down for pets, Francis just looks at you like, ‘Why are you trying to pet me when you can just pick me up?’
Plus, she’ll clean her face—which is among the cutest things ever—and munch on snacks while sitting on your lap. I’m a very lucky human to have her. Truck buddy didn’t feel right about just dropping her at a shelter or putting an ad out on the Internet. So, yeah... I’m blessed.

However, on December 22, 2018, one of the most amazing critters ever, passed away in my arms. It was Voltaire’s time to go. I knew the day would come, but that didn’t make it any easier. I love Francis and understand that she’s her own ‘person’, but it would be dishonest of me if I didn’t admit that I frick’n ‘wish it was the other kid’.

I don’t care how that sounds, but this is my blog and I’m being honest. I’m very happy to have Francis and look forward to having her presence in my life for many years to come. But, the Queen of the Universe is gone and I’m gonna be sore about it for a long time, dammit.

The Queen is dead, long live the Queen!

Well, that's not quite right...Pen Friend to the rescue!

As I've mentioned previously, there's enough spices in my kitchen/freezer/fridge/pantry/garden to make the Silk Road traders of old quite envious. In fact, my pantry has essentially been converted into my personal apothecary. A buddy of mine loves to stick his head in the cupboards and inhale quite deeply. To be fair, I also huff my spices- but that's because I've had my fair share of blind idiot moments.

I once tried to put  parmesan  cheese in a vaporizer because it looked just like the Morton's salt.
Recently I was making some pan fried taters (I don't use the oven much anymore unless I have a friend/sous chef with me so I don't add more scars to my collection) and they were coming along quite nicely. Until I realized that I hadn't actually grabbed the paprika--which is of course the 'happy spice'. Nope! There was definitely no taste of happiness, as I had grabbed the Cayenne pepper instead. That stuff is a wonderful styptic and I have it all over my house for just that reason, but dammit! It's not the happy spice.

So, I grabbed what I thought was the paprika and added it to the taters. Again, without investigating it like a little raccoon, which I usually do. Well, guess what? That wasn't paprika either! I gave up on that bit before I ended up adding every other type of spice from all corners of the globe, and balanced the flavour out with some basil. The taters came out rather tasty, but they weren't what I had wanted to make in the first place.

And unrelated to spice mix ups, I once tried to pay for some snacks with my library card, along with a whole bunch of other dumb things. But, there is an amazing little gadget called a Pen Friend.
It's made by a British company called RNIB. I was lucky enough to get one from my state's Commission for the Blind. They get limited grants and the Pen Friend isn't cheap.
How does this relate to anything I was just ranting about? Well, lemme tell 'ya all about it!

The Pen Friend is this nifty lil gadget that looks like a cross between one of those big multi ink pens crossed with a microphone. It comes with a set of white labels that you can use to record various things, and there's even a set that you can get that are washable and machine safe so you can label your clothes. It even doubles as a media player, which I use to listen to some of my prayers and meditation music.

The way it works is by storing the information that you record by programming the lables and you can add things to it like a media player by plugging it in to a computer.

Using the labels goes a bit like this: say you have spices or canned goods that you can't tell apart. You simply place the lable on the item and hold the Pen Friend above it. Hit the record button and say what the object is. Once you've labeled everything, just hover the Pen Friend over it and the prerecorded description will play.

The labels are reusable---just peel them off and stick it on to another can of sliced potatoes or whatever you programmed it for. Or, you can just reprogram them by recording over them. I love that thing! You can even colour over them to make them easier to see or help differentiate them from other things you've labeled.

I use it mostly for phone numbers, canned items, and my spices. But, because I couldn't resist, I labeled my friends dog to demonstrate. Hehe

A lovely thing I learned in Holland

A few years ago Awesome Guy and I went to Holland for a big 'ol convention: Dance Fair. He's a music producer and this was quite the big-to-do. So, while he was off giving presentations and schmoozing, I hobnobed a bit myself and then went on a culinary adventure. I'll talk more about the trip in a different post, as we had a great time.

But, as I was hunting down me-friendly-food I was struck by the quality and vibrance of the food. Walking around in the local market was amazing! The vitality of the produce was incredible- and it definitely had an effect on the locals. Everyone was radiating that inner beauty which can only be attained  by consuming top quality  produce, which was EVERYWHERE!

On every table with every meal was a pitcher of water stuffed full of  fresh mint sprigs, and often raspberries as well. Ever since my first sip of it, I have been hooked! There's frequently a pitcher of the stuff in my fridge since then. I highly recommend it! Here's how to do it and also a bonus infused water recipe that I learned about from my local hospital:

Mint infused water from Holland

Get a big 'ol pitcher of water and fill it with as much fresh mint sprigs as possible. Refrigerate until infused.

Raspberry infused water from Holland

Add as many raspberries (lightly rinsed) as possible to a pitcher of water. Refrigerate until infused.

You may even get a pitcher going with raspberries and mint, which is also  divine!


BONUS RECIPE!!!

Follow the above directions, but use cinnamon sticks and cantaloupe for the infused water.

The great thing is that you can get several pitchers out of one batch by just adding more water


Since experiencing the mint raspberry water, I am seldom without a pitcher of it ...or two.

ENJOY!

The secret to a great Ruben

I have an unusual talent for making damned good approximations of cheap Chinese takeaway and the  coronary special from your local greasy spoon. I make said food for carnivores and vegans alike, and boy do I make a damn good Ruben.

The secret is in the sauce for sure and I get the best results from using the veganaise pesto mayo. Here's the recipe, feel free to make yours with critters:

Kick ass Ruben

Get yo'self two slices of some good kosher rye bread. Spread some butter or equivalent (earth balance) on both sides. Place in a pan until golden brown.* Flip 'em and add sauce on one side, cheese or equivalent on the other side, then load up on light life bacon (that you pre-cooked), and some sauerkraut. Assemble the sandwich. Heat on either side until golden brown, warm throughout, and nice and melty.
If it's done on both sides but not gooey yet, pop it in the microwave until the cheese melts.

* About now is the time to make the sauce:

Pesto mayo (or plain)
Ketchup
Relish

'New pain' and definitions

Just came back from an appointment with some folks at the pain management center at my local hospital. I actually saw the PA, so I listed it as 'New Pain and friends' on my calendar. The PA was great, and although I left without chemical enhancement, this was the first time I came away from a visit with hopes of an actual plan. That was awesome.

It seems like there's two extremes with such appointments-- either a big'ol script or lots of eval only to be shuffled off to somebody else. Then it's pretty much wash, rinse, and repeat. I frakking hate that! I get it if you don't want to send me on my chemically-enhanced-merry-way. I also get that I'm a complex case. Furthermore more, I understand the restrictions put on pain meds and the fact that they can burn out your dopamine receptors over time. I like those receptors and want to preserve them as much as possible.

 This visit was so refreshing because there was a mutual understanding of what may help, what has helped, and what needs to happen to have a plan in place. We also discussed what my options are if the plan needs to be adapted and what limitations I might face from their end. This office is willing to send out notes to my other docs so that nobody is left with their dicks in the wind.

One of the things we discussed was Topomax. I have been on it in the past, but had to d/c it because it made me wig out. There was another med that helped with that problem, but my insurance no longer covers it and the black market won't take my kidney.  I'm glad it came up though, since I may end up on it again at some point and wanted to know more about managing that side effect. The conversation went something like this:

New pain PA: So, was one of the medications you tried in the past Topomax?
Me: Yes, but it made me hardcore wig out.
PA: Like, anxiety? Or any racing thoughts?
Me: It made me extremely irrational.
PA: Gotcha...umm I'm just trying to think of the best way to put that in my notes...
Me: Batshit?
PA: (giggling) Yeah. In medical speak

Rhino skin

Sometimes, neuropathy is a blessing in disguise- I no longer experience afterburn. I have a bad habit of accidentally boiling my hands. Hot clear fluids and neurological issues don't mix well. I have a lovely collection of scars to prove it. But then there's the thing that happens when you really cook your hands good. It's the state between a second and third degree burn that doesn't blister. You know, rhino skin. I earned myself a nice pachyderm patch of it on my whole left thumb. Thanks a lot oatmeal