Posted in medical, Speech

A (sorta) funny emergency speech story…

This post is part of a series of posts on the topic of speech.  Please read the first post in the series, New Blog Topic: Speech, to give you some idea of the backstory here.  99% of the time I’m completely unable to use speech as a primary mode of communication, and that is still true.  But this speech blog topic is about both my baseline level of speech these days, and an emergency speech mode that sometimes makes me fluent without any conscious control over the process. 

…well it’s funny when viewed from a certain perspective, and in hindsight mostly.  And it illustrates a serious problem of inconvenience with emergency speech.  It also happens to be the shortest period of emergency speech I’ve ever had1.

So one day I decided to go to the farmer’s market. Someone would drive me there and I’d walk home. I didn’t take a lot of mobility or communication equipment I really could’ve used.  I wasn’t expecting to need it.  Mistake.

A bunch of booths at the Burlington Farmer's Market in City Hall Park, Burlington, Vermont.
The Burlington, Vermont farmer’s market. I don’t know exactly what I was expecting. In California, farmer’s markets as I knew them were roadside stands where fresh produce was sold cheaply and mostly poor people (including the farmworkers) shopped there because it was cheaper than the grocery store. That is… so far from what a farmer’s market is around here that I found myself quite surprised by it all. I did find some amusement though — there were Anaheim sweet peppers with no spiciness to them at all, not even a tingle, labeled with a spiciness warning. And even the best hot sauce I could find wasn’t that hot. It made me realize how Californian my food tastes are.

Anyway, I tried to walk around a very long line at one of the booths, and hit a slippery patch of mud. I took one of the most spectacular falls I’ve ever taken.

I don’t know if you’ve ever seen someoone W-sit. I’m hypermobile and such a posture comes naturally to me. (It’s considered horrible for you but if your joints are loose it’s a very stabilizing sort of posture.) Normally, W-sitting looks kinda like this:

wsitting_850px_10-600x600.jpg

So just imagine that I’m lying flat on my back and my legs are kind of in that W-position except somehow they’re folded so they’re underneath my back, and you’ll get the general idea.  I’m at that point in excruciating pain.

So I yell — with total clarity and fluency and no trouble at all making myself understood, nor any pre-planning to what I was going to say — “WILL SOMEONE PLEASE HELP GET MY LEGS OUT FROM UNDER ME!?

And someone runs over and does it.

The sharpest of the pain vanishes instantly.

And then I can’t talk anymore.

And at that point there’s paramedics, and a lot of information I have to give them, and talking would be really convenient at that point.  But nope.  No fluent speech available.  Barely any non-fluent speech available.  And I’ve got several broken ribs and two sprained ankles.  (They concentrated so much on the ankles that none of us even noticed the ribs until later after I’d got home.  Fortunately(?) because I have osteoporosis, I’m used to broken ribs and knew what to do.)

It ended up okay, but this is a good example of the way that emergency speech is largely outside my control.  And how it doesn’t always have a lot of rhyme or reason in terms of convenience — it would’ve been nice if it stuck around for the paramedics, but it didn’t.  My brain has a mind of its own when it comes to the occasions it decides fluency is gonna happen.

I don’t remember exactly when this happened, other than that it was the same summer I was in the ICU, after my ICU-acquired emergency speech2 had gone away.  I also remember that they actualy discovered the many healed broken ribs, along with a stable stress fracture to my T12 vertebra, the December after this.  They’d been doing a lung x-ray and my lungs were fine but other things were clearly not.  So this would’ve been the summer of 2016, I just figured out by checking some records.

But… yeah.  Apparently my brain decides when fluency is medically necessary, and it doesn’t always agree with me on the matter…


1 Understand I haven’t had this happen that many times. But the amount of time I’ve had it stay on more or less consistently has ranged from seconds to a few months. Right now I’m in a very weird period where it’s trying to stay on longer than it ought to due to a huge amount of medical crap happening, and the speech trying to turn on even past the point it can sustain itself… it’s causing all kinds of mayhem in the process. And by mayhem I mean actually dangerous to me.

2 This speech had been longer-lived than just a sentence, and lasted my entire ICU stay and then a little after I got out of the hospital. It began sometime in between when I had a long series of seizures, and when I stopped breathing. The existence of speech was actually one of the factors that caused people to call 911.

Posted in medical, Uncategorized

Hippie food

So I’ve been struggling to keep my potassium at normal levels even with supplements.  I’m losing fluid continuously out a hole that has to wait a long time to close naturally.  Combined with the fact I had cellulitis and ended up on antibiotics (yeah this surgery has sucked donkey balls with the complications, it was a simple surgery that went awry in a million ways) which did… things… to my digestion, I’d been losing so many fluids I went alkaline and all my electrolytes ended up askew because of that.  Even after the antibiotics stopped, still losing lots of fluids, still going alkaline.  (I have other risk factors for that but never actually go alkaline except when losing a lot of fluid.)

So my potassium was going low and staying low.  Not as low as it’s been in the past.  No stopping breathing, no seizures, no lab results marked “LL” for super-low instead of low, nobody telling me it’s critically low like at my last hospitalization.  But low potassium is too low potassium, and even with supplements it wasn’t staying up.

The nutritionst learned I like to go to the cafeteria and grab things like V8 to get some nutrients that aren’t in my tubefeeds.  She thought this is great.  (She seemed thrilled to have a patient whose main food craving is vegetables.  She must not get that a lot.)  Anyway she told me that they wanted to see if adding food sources of potassium would help me in addition to the supplements  So she gave me a list of high-potassium foods, which happened to mostly be foods I was already getting.  She also said I should try kombucha as a probiotic because it’s easier on my guts and on my tube than yogurt.  I’d never heard of kombucha but it is easier to digest and it smells good.

And she also gave me this nifty pass that allows me to buy anything in the cafeteria for free as long as I am a patient here!

Photo on 7-26-18 at 2.37 PM
My free food cafeteria pass!

So I go in there and the highest-potassium food in the cafeteria is coconut water.  Which comes in the most ridiculous hippie-oriented packaging.  So I’ve been stocking up on coconut water, kombucha, V8, and whatever other random liquids they have that are on her list.  But mostly coconut water because it has the highest potassium.

And it works, my potassium is up.

But I feel ridculous someimes with my cafeteria tray filled to bursing with hippie food:

Photo on 7-26-18 at 2.36 PM #2
Kombucha, coconut water, and V8. The kombucha and the coconut water feel like I’m eating hippie food.

But my potassium is up and indeed this morning my electrolytes were totally within normal range for the first time since I got here.  So the hippie food works!

So I guess I will be eating  lot of hippie food for a while.  If the hydration and potassium help keep me out of alkalosis, I’ll eat damn near anything.

But the hippie food… wow.  My friend wanted to go to the gift shop and get me some kind of stereotypical hippie items to go with my new food preferenes, but she couldn’t find any tie-dyed scarves or anything so she gave up.  She has been attempting to tell me that my plan to eventually create a prebiotic and diabetes-friendly vegetarian diet using regular food (i’m high risk for diabetes because steroids and my tubefeed diet is not good for that, and the prebiotics help prevent c diff which I’ve gotten already this year and am high risk for, meamwhile vegetarian because easier to hang in feed bags without worrying about rapid spoilage) proves that I have been a closet hippie all along who believes in natural organic everything and thinks my food choices make me one with the earth and karma and all sorts of ridiculousness.  (She gets very elaborate with her teasing but it’s all friendly.)

But in this case the hippie food is working, so I’ll put up with any jokes.  I find it kind of funny myself.

SERIOUSLY look at the packaging on that coconut water…