Medication Harmonization

With my condition, I've had to fight off a lot of ills.

Life is easier when you are given the right medicine,

I've had IVs and injections, but mostly pills.

Below is a list of some of the drugs I've taken.

I'm sure I've left more than a few off this tabulation,

The last four years I have played a kind of medication roulette.

The medications mentioned are from top of the head improvisation.

So as not to show bias, the meds are in order by alphabet -

 

To reduce spasticity I take Baclofen

Clonazapam  turned me into a zombie

When my poo got too hard, I took Coalase to soften

I took decadron to make my brain less swelly

A painkiller called Dilaudid filled me with glee

Fioricet rushed my headaches away

Thanks to Flomax, I filled the toilet with pee

Gabapentin didn't keep the tremors at bay

Hydrocodone provided quick and easy pain relief

no more pain with morphine

Nuvigil keeps me awake and on task

Provigil worked ok until Nuvigil hit the scene

Ranitidine - you probably know it as Zantac

Calm the tremors with Requip

A spasticity med that didn't work is called Tizanidine

Viibryd = no more frowny lip

With Zoloft, the sun always shines and the grass is ever green

I can't make everything rhyme on this,

specifically, I speak of TBI is...

Throat is Bumfuzzled about Ingestion - It is not uncommon for TBI and stroke sufferers to develop dysphagia - Siberian for "confounded neck-hole". I still have difficulty swallowing liquids without some getting into my windpipe.

IN THE YEAR 105(ish) and The Varsity TBI Squad

This one turned out to be pretty long; it's a blog and it's long - it's a blong.

I'm going to skip over the entries from July 7th, July 13th and July 22nd, each of these talk about my time at Pate, which I have already discussed. Instead we will skip to August 5th. Coincidentally, that was 4 years ago today minus 105 days. What is the significance of 105? IDK, so I'll Google it! Besides the Wikipedia entry for the year 105, I see mostly radio stations (105x BAM! The future of rock and roll). Reading through the Wikipedia article gets me thinking - why is there an entire article about the year 105? Put briefly, people died and a three month old was given the throne of China. Perhaps the most interesting part of the article is the fact that the year 105 started on a Wednesday. Coincidentally, tomorrow is Wednesday, small world.

Here is the original entry for August 5th (which, coincidentally is 105 words long. It would be if I took out 34 words. According to Google 34 is the number of...:D).

Oops, as I'm writing this on Monday, the number of days should be 104. I don't wanna change it - I don't think a three month old became emperor in 104 - they weren't nearly as progressive with the age/potty training of potential rulers in 104. Either way, I think I'll make a joke out of it later.

Ok, here is the entry from August 5th, I promise -
The (Near) End of Phase Three
My time at Pate and away from home is coming to a close. This Friday, I will go outpatient. As far as I know, I will be picked up and brought to Pate every weekday at first and gradually taper off.

I walk with a cane or independently now. Without a cane, I would look like a mummy if I stuck my arms out...but it's walking. I do mostly physical therapy as cognitively I haven't lost much if anything. Physical therapy consists of whatever my therapist cooks up (lately its been lunges), leg biking, treadmilling and what I can best describe as yoga (contorting my legs and midsection into various uncomfortable positions).

The thing that really sticks out from this entry is the first sentence - I was soooo glad to be done with the walker. Not only do people stare, but it makes it more difficult to carry stuff when both of your hands are holding the walker.

I still try to exercise the...uh, exercises learned during PT - I still get on the treadmill twice a week, instead of lunges I do squats; my balance is still a little wonky, lunging across a room = Jarrett fall down. As for yoga, I stretch my left quad and both hamstrings everyday and do a nerve stretch in my arms/necks (that's right, I have more than one neck), then I vogue - I flail my arms about in front of a mirror to monitor/improve (monimprove?) my posture/coordination (coordinature?).

I continue to work out because I want to be more prettier; I grew accustomed to the easy to identify benchmarks (not sitting up in bed to sitting up in bed, taking 17 minutes to tie my shoes to taking 11 minutes, etc.) I'm not seeing these types of gains anymore, which is a bit disheartening. Thing is, what else am I gonna do? I don't need to add overweight diabetic to my lot. At this point I think of a quote I heard long ago, something like, "He/she who moves a mountain, starts by moving small stones." I added the he/she because I'm pretty sure my daughter could move a mountain through sheer tyranny of will. It seems to me that I'm at a point now where I won't really sense improvements as much as they'll just become a part of what I do all the time. That is, I'll keep chipping away at this "mountain" (disability) and, perhaps soon, I will realize the mountain has moved (no more disability).

Here is the next entry (August 20th) -

Home and Inpatient
Sorry for the delay...if I don't think people are reading this blog much so I am more reluctant to post on it, holla if you wit me!

Everything has gone according to schedule so far, I couldn't have asked for a more punctual rare brain disorder. I came home to stay on Aug. 7th and have been riding in a Pate provided transport (a Chevy Venture) to therapy everyday.

I have moved to the ILS (independent living skills) area for more distraction and "real world" type setting. I spend my day preparing lessons, being psychoanalyzed or working out. We also have a once daily education group, where we learn about brain injuries (and promptly forget, because we all have brain injuries :D). What was I talking about? Oh yeah; every Thursday I give a movie synopsis and review...I already forgot the films I reviewed. Okay, I have really beaten the "brain injury forgetfulness" act to death. Last Thursday I did Julie & Julia and this week I reviewed The Watchmen. Both are great, go watch them, dammit.

To answer everyone's yet-to-be-asked question the answer is "yes, if you fight for me you get to kill Englishmen." Oh wait, I mean, yes, I am happy to be home. I do what I can to help out, such as eat up all the food and flush the toilet when I'm done...you know, but there is a lot to be done. Jessica has been very gracious and supportive through this ordeal and is always thankful for the things I do manage to do.

At this time, I get around using a cane. I can walk without it, but need it for those gusts of wind that only I seem to feel...strange. I still have double vision. I wear a patch most of the time to single everything out. Lastly, my voice sounds like I just ran a marathon; I sound winded and tired. The latter two are the most bothersome.

Next up, surgery. I have brain surgery scheduled for Sept. 3rd...I will blog more about it shortly (preferrably before surgery, b/c my brain seems to have a profound effect on thinking and typing).


Otherwise, I make preparations for the coming school year or test my reaction time on the computer on a program called VMR to earn driving privileges back (this way I don't run into the little yellow block).

I have another MRI and appointment with Dr. White on August 18th.Hopefully, I'll be ready for surgery at that point and can get it scheduled ASAP. After that, more rehab (yippee!)
There's quite a bit of content in the short passage above. Like a word flavored buffet (tastes like chicken), I'm going to talk about this & that and leave the rest to get sneezed on.

As it says, ILS = Independent Living Skills. Before my "promotion" to ILS, I was assigned to TRILS -Transition To Independent Living Skills. I remember feeling insulted that I wasn't automatically assigned to ILS. I have this thing for hierarchies and rank. Listen, in the world of brain injury, there is no hierarchy. All the same, I saw ILS as the varsity squad to the junior varsity of TRILS. When I finally got moved up, I was thinking, IT'S ABOUT TIME! In actuality, ILS and TRILS operate in much the same way. The biggest differences are the radio and location. You see, ILS was right by one of the main thoroughfares of the rehab facility, so there was the constant distraction of people coming and going. Also, the radio was always on playing ear garbage - I was more distracted by contemplating how this "music" got on the air than the constant noise. The reason for the distraction is that people with brain injury have more difficulty concentrating, all the distraction is meant to train your brain to filter out the distractions of work/home (hork?).

Much of the entry deals with setting up surgery. Allow me to go into more detail - I didn't have to have surgery. I was told that I could leave the cavernoma and recover more better BUT risk having another leak(s) and going through a whole new "injourney" or having surgery and sustaining what damage that might cause and not worry about more leaks. For me, this was a no-brainer (actually it was a "brainer" because I had to have a brain to be operated on). Anyway, because of my situation, I strongly advocate for surgery. If you are reading this and contemplating surgery, let me say this (if you're not contemplating surgery please skip to the ***paragraph), you need to consider the expertise of the doctor (base this on what others have said and you're gut feeling of the guy/gal), severity of symptoms (mine were pretty bad, some people's are less severe, others are far worse), post op support (after having brain surgery, you might need help doing everyday things), and the quality of food at the hospital where the surgery is to be performed (not so much because you'll be eating a lot of it, more so because you'll want your upchuck to not taste so bad when the food comes back up - which it will, often).

***I'm going to skip to "TBI is..."

TBI is...Thanks Be To the Internet! I think we all know how awesome the interwebs is. For me, I can't go a single day without looking up synonyms on thesaurus.com. In fact, I just got on there (unless you read this way after 12:43 on Tuesday 4/23, in which case I got on there a long time ago), to look up a synonym for thesaurus. Turns out, thesaurus doesn't have that many synonyms. Ironic, much? I could give a lot more reasons for the awesomeness of the internet, but I'll just give you a synonym for "end"

FIN

@JarrettLWilson

Pating to Go and Motorized Dairy

How many shots in the foot this time? I'm sitting in the lobby of the doctor's office contemplating how many new holes my foot will have. I can't say I'm terribly upset about it, the last round of Botox wore off long ago.

Two. I got two shots in the foot. I've said this before and I'll say it again - it.

I jest. You'd think that the first shot would prepare you for the next one so it won't hurt as bad, but it don't work that way. My advice to you is this - don't get a shot in your foot, but if you have to, just get one.

Let's continue revisiting the early entries on this blog. We pick up at the "bridge". I've not been told otherwise, so I'll assume that my...uh...assumption is correct regarding the Pons as a silly doorman.

I'm going to skip over the entry entitled  "Thank You"- my divorce is still a sore spot for me. Which gives me more time to write about a place that I hold very close to my heart (and my brain)...
.
The Next Step
 On Monday, July 7th, I am going to another rehab facility in Anna, TX (closer to home WOO!) called Pate, which specializes in brain matters (pun intended). The projection is 6-12 weeks...then (hopefully) home!!!

After my bridge done flooded I went to an acute rehab center. After that, I started rehab designed for people with brain injuries at Brinlee Creek Ranch - the Anna, TX arm of the Pate rehab racket.

Despite the circumstance, I think back to my time at Pate with great fondness. I don't want to say that I am an outcast or something like that, but sometimes people don't understand why I'm peculiar and they'll treat me differently (i.e. the guy at the oil change place that I no longer go to who would speak AT me very loudly and very slowly). At Pate, I didn't have to worry about that - I was surrounded by people just like me.

We were all there for different reasons, but we all shared the same battle - trying to get along in the world with our newfound disability.

I have some very fond memories of that place such as: clicking at dots on the VMR like so much Pavlov's dog - TWICE! Tyrant therapist (tyrapist?) made me do it before surgery and after. Another sad yet funny memory is having to tell this dude that had a brain tumor removed my name EVERYDAY! I can't seem to remember his name now, how poetic. Please know that I'm not laughing at this guy, he'd laugh about it too, but I'd never slight a fella in his shoes.

The most useful, yet still frustrating thing is the way everything is so regimented. Useful = No surprises. Frustrating = When a surprise does arise (surparise?), I feel like I've gotta rearrange my entire schedule. For instance, when I have to shave (I do this in the evenings), I feel like my entire evening is shot. You see, I usually make an evening to-do list during the day, I never add shaving to that list. I've heard that a neat appearance helps one attain/keep a job. Knowing this, I occasionally shave. You'd think that, having shaved since I was 13ish, it wouldn't (side note: we have a contraction for it would - 'it'd' and a contraction for would not - 'wouldn't'. I propose a contraction for it would not - it'd'nt. Wait a minute, what about 'twouldn't'?) Starting over - You'd think that, having shaved since I was 13ish, 'twouldn't' come as a surprise, but it does. I'm not sure why this is the case, but it is.

All this is to say that Pate has turned me into Rainman - I have to have things just so or I'll flip out and start banging my head against stuff.
Allow me to quote Rainman in this very contrived segue - "I'm an excellent driver" when I drive...

TBI is...The Buick Ice-milk: my car, a Buick Lucerne, shares its name with Safeway's own brand of dairy products.

This one actually does very loosely connect to my TBI. I don't care to elaborate, but about a year ago I needed a car. Serendipitously, my pater got a promotion that included a company car. Neither my mother or my father can drive two cars at the same time (amateurs!), so they sold the dairy product/motorized conveyance to me.

FIN

@JarrettLWilson

Did You Really Think That Was It?

...Moving on, recall from my last entry about the second part of my first entry, which had six entries on the first of July, being the seventh month of the year 2009...uhh...backfire - in my cute attempt to confuse I confused myself...I ran into a doorway at the Target and went back to a hospital (not because of the doorway).

During my stay at the rehab hospital, I'd make frequent trips to Dallas to see my neurosurgeon, Dr. Jonathan White, when I say his name or picture him in my head I hear the angels singing; this man is a god as far as I'm concerned. Here are the particulars -

The Doctor Visit
On June 30th, Jessica, My parents and I met with Dr. White, a neurosurgeon, at UT Southwestern. I also got an MRI. The doctor (and the scans) suggested I wait a while longer as there is still too much blood in my head. BUT, surgery is possible given the current location. I will go back in two months and do the same thing and hopefully the blood will have absorbed (enough to operate anyway). The surgery itself is risky and will likely send me back to rehab (if not worse). The tradeoff is a lifetime without fear of this recurring with some permanent damage or the possibility of recurrence and the fear that that possibility brings. I am opting for the former (surgery).

Dr. White looked at the pictures born out of the loud noises shot through my skull and reckoned we wait until the bleed site becomes not so bloody. I was a bit upset about this, I was ready to have that thing out of my noodle. If I may borrow the tone from the JG Wentworth (this blog sponsored by lump sums for structured settlement payments) commercials - IT'S MY CAVERNOMA AND I WANT IT OUT! I do worry about it growing back, but I'm glad I don't have to worry that it's gonna erupt again. I sometimes think how it might be if I hadn't had the surgery, then I think about not walking and paralysis and that thought quickly goes away. For those of you contemplating surgery, many will say "it's a very personal decision." To me, that part is implied, my advice is this - if your doctor is confident he/she can cut it out with a minimum of residual damage and you trust in this doctor after having done your research on him/her - cut that sucker out of there; don't wait for it to bleed again. What's next?

Location, Location, Location
 My cavernoma is located in the Pons region, located on the brainstem which controls (from what I understand) -

- Autonomic function (breathing, heart rate...stuff that just happens automatically *gulp*)
- Sleep (This I know)
- Messages between the cerebrum and cerebellum
- Hearing
- Fine motor skill (This I know)

There are more, but these seem to be the most prominent. Again, this info. is from my limited understanding.

I've written about the Pons more thoroughly HERE. For the most part, the functions listed above are accurate. I'm starting to suspect that most of the issues I've experienced and continue to deal with have more to do with the bridge function of the Pons rather than the functions it controls. Here's a better explanation: let's say the the Pons is a silly doorman at your apartment named...Pons (I couldn't think of anything else), the apartment building is the cerebellum, the area outside the door is the cerebral cortex, and you are a message. Pons is a pretty eccentric dude, he wears sunglasses all day, and once tried to give a swirlie (swirly?) to a solicitor. You're not concerned with his personality, you just want him to open the door. One day, he decides he doesn't want to open the door anymore. Now you have trouble getting from the building (cerebellum) to the outside (cerebral cortex). What's more, Pons has no direct control over your balance, but he can put a trip wire across the doorway, much like...

TBI is...Tempest Blows Indoors. I tweeted this one earlier in the week, but I'd like to give it more explanation. Here is the original explanation - For no reason, I'll flail my arms about to regain my balance after thinking about tacos or something. You see, I often have to think about walking the way most people would think about math. That is, I have to think pretty hard about the terrain, wind, fatigue, etc. As I've mentioned before, there are shiny things everywhere. If/when I get distracted I can lose my balance pretty easily. Luckily, I still have a pretty good reflex to keep me upright. This comes out to - Jarrett is walking down an aisle at the store, Jarrett spots a fancy, yet useless gadget in the "As Seen On TV" display, Jarrett loses his balance, it looks like Jarrett is swimming through the air as he tries to regain equilibrium.

FIN

@JarrettLWilson

More Time Travel and Jean Claude Van-Damme

I'm not sure why, but in my early entries I'd post multiple times in one day. This vexes me verily (vexily?). Granted, there was a lot going on at the time, but could I not gather my thoughts enough to include everything in one entry? I picture myself going back in time to find out why. I get there and say, "Dude! Why do you post multiple times in one day?"
I look at myself, puzzled, and reply, "Dude! You had the opportunity to travel back in time and you choose this time and place?"

Feeling like a dimwit, but wanting to redeem myself, I ask, "When/where would you have gone?"
We get into a long discussion about orangutans and breakfast cereals, etc. Eventually, I insist that I answer my question. Just as I'm about to speak someone walks in with a box of donuts; we both reach for the maple cake donut, Our fingers touch, we both turn into big blobs of flesh, coagulate into a puddle that shrinks until it disappears (watch Timecop, it's based on a true story of a corrupt, time traveling senator and how Jean Claude Van-Damme is a weiner. I can't find the scene itself, but here's a TRAILER). Anyway, I never find out why I posted several entries in one day and I blot out my own existence...

The Magnet in My Head and Scurvy

Happy Easter (HappEaster?), internet!

Recall from last week my trip to the ER and my helicopter ride (I was going to say free, but I think it cost the insurance company about $17,000; I would've paid it myself but I just purchased a yacht to go with my beach house in Maui). The next entry on July 1st, 2009 reads thusly -

The Target Incident

I have to post this because it's funny. On the way back from Zale, my dad and I stopped at Target to fill my prescriptions. We waited for what seemed like an eternity (I think it was 30 minutes or so), all the while, I was stumbling around like a drunk. On our way out, an employee was coming in through the out door, I just had to inform her of this. I told her then promptly slammed into the same door she was mistakenly entering. Gonna keep my mouth shut from now on.

An early symptom from the hemorrhage (this one was kinda fun) was impulsivity; I had no inner monologue - if a clever thought popped into my head, twould be uttered. In this case, I just had to inform this "team member" who OBVIOUSLY should've known better that she was using the wrong portal. I already had trouble doing two things at once, an injured noodle only further compounds my multitasking ineptitude (ineptitasking?). My point is that walking AND talking AND pointing out a social faux pas was very dangerous indeed. How can I be expected to do all that and NOT run into something?

The last entry on July 1st reads -

Back to (a) Hospital

Jess and my dad worked diligently to get me into inpatient care. After a few days, I was admitted to a rehab hospital in Allen called Twin Creeks. I have been there for about six weeks. The staff has been phenomenal (though there have been a few incidents) and the food is great. My progress has been steady...but still a ways to go. When I got to Twin Creeks I couldn't walk, barely talk and could hardly stand up straight. As of this writing, I am able to walk (assisted) with a walker, balance myself while standing, talk and type (obviously). I still have very disorienting double vision, wonky balance and slow speech. The battle continues!

My time at Twin Creeks is surreal - I still couldn't believe what was happening to me. Aside from therapy and getting poked with needles, I have a handful of very vivid memories from that time -

1. At the foot of my bed was a plastic panel with handles cut out on both sides. This panel was pretty wobbly; one night, I decided to put my feet through the cutouts and see if the panel would come off - it did. I didn't plan for this event and panicked a little; but, despite my diminished coordination, I managed to maneuver it back to its place.

2. My impulsivity continued - at one point, I told my physical therapist that she smelled funny

3. There were two of everything - this got pretty annoying when watching tv, but I always got twice as much food as the other patients :P

3. There were two of everything - this got pretty annoying when watching tv, but I always got twice as much food as the other patients :P

4. I'd occasionally wheel myself to the entrance to greet and see off visitors. I'd say hi to someone, they'd reply in kind and ask how I was - my brain would tell my mouth to say "I'm f'ed" - having no filter, I'd say, "I'm f'ed".

One of the more troubling difficulties I encountered soon after being infirmed is extreme posture issues. Imagine that the left side of your head is one pole of a magnet, and the ground is the opposite pole. Even when you're standing still you feel an irresistible pull towards your left side. I recall the first time the physical therapist put me on a walker; despite my best efforts, I couldn't walk forward, I just wanted to fall on my side so that the magnets could meet.

ITEM! Thanks to a brief visit with an OT, my left arm has found new life. It's still shaky and slow, but I'm getting a lot more use out of it. This guy didn't say anything I hadn't heard before. However, he is from Scotland - the accent might be the key factor. He also showed me a nerve stretch for my left arm. Whatever the case, I actually get upset with myself when I pass up an opportunity to use my left arm. My point, I have two -

1. If you're in (heh, pee-pee) PT and/or OT, your outcomes will improve if you imagine that your trainer is speaking in an exotic accent.

2. I get on my nerve...and stretch it everyday now. I think this stretch would benefit anyone, so here's how it's done -

Items needed -

a wall (or other flat, vertical surface. For example - a wall).

An arm (you should have two of these - a "right" and a "left").

A nerve (not sure what it's called, for purposes of this guide we'll call it "Nerve Existing in the Region of the Deltoid, or NERD).

Stand with your feet parallel to the flat, vertical surface. Stretch one arm out to meet this surface. Turn your fingers downward, jut your shoulder out (the shoulder with the outstretched arm). Now lean your head towards the opposite shoulder and feel the stretch, really work that NERD. Count to 784, spin three times and sing the national anthem. Now you should be able to play the banjo like a pro and lift a car like so much Superman on the cover of Action Comics #1. As you can see, I skip around a lot, from NERDs to banjos to Supermans. Here's why -

TBI is...Thought Becomes Inconsistent - I tweeted this last week, but tweets are limited to 140 characters, I thought I'd expound on this one. Here is the original explanation:

I move slow & shiny things are everywhere. I'll get somewhere, spin & say "why'd I come here?"

I realize that many of you out there, dear readers, do this. Allow me to qualify this explanation - I USED to be very quick and astute as concerns remembering things (this blog brought to you by my ego: "nothing's changed!"). Further proof - I went to get a glass for OJ this morning. On my way to the cupboard, I saw scuzzy grossness in the kitchen sink. I stopped to send it to that great big garbage disposal in the...my sink. I ended up having to chisel some petrified cereal off a bowl. This went on long enough for me to forget about the OJ. Because of this distraction, I'll probably get scurvy and suffer a painful...symptom of scurvy.

I'm going to stop here. I'd like to be able to claim that I finished a piece of writing discussing how I might have scurvy.

FIN

@JarrettLWilson