Posts Tagged ‘ wife ’

Time Again for New Sx!

www.marriedtothesea.comThis is another one of those things that I’m betting my doctor will flatly refer to as “normal disease progression,” and he’d probably be right. I’m glad I’ll be seeing him next week, because aforementioned lip and eye spasms have evolved to include mouth-chin-and-jaw spasms.  The mouth spasms occur most when I actively try to say anything, but the chin and jaw are each on their own individual schedule.

Y U DO THAT?

Y U DO THAT?

My face from below the lips feels like the pulsing muscles of bodybuilders fresh out the gym. Where my Fu Manchu would be (were I either an evil criminal mastermind or a studiously misdirected white dude) something below the skin is holding up barbells as I type.

I could Lifetime™-Lament “WHY!?” But that answer is easy. Instead I am spreading my grief thinly, like so much bagel schmear. On a huge bagel. A BAGEL OF GRATITUDE.

  • I am grateful for my wife, who encourages me to do what I love without selling myself short.
  • I am grateful for my family, who hold one another up even if they, themselves, were falling.
  • Happy-Birthday-CowboyI am grateful for Cowboy, who at eleven years old has not diminished in the adorability factor at all. He has nearly as much white hair as brown now and can finally, rightfully, claim his “curmudgeon” status on this year’s taxes.
  • I am grateful that I get to file as 50% of a married couple this year on my federal taxes!
  • I am grateful that SSDI is soon to be in effect and that I will soon be able to afford better care than I currently do.
  • I am grateful for Amantadine for helping me feel a little more myself even through the worst times of disorientation/dizziness.
  • I am grateful to Earlier Me for already getting those clean dishes put away.
  • I am grateful that I’ve been able to walk so much the last few weeks, and
  • I am so grateful to the Congaree National Forest for being the most beautiful place in 100 miles to do my four.
  • I am grateful to be able to do a little yoga in the shower.
  • I am grateful there are fresh vegetables in the fridge and rice already cooked in the steamer.
  • I am grateful that, despite being shaken mightily by the facial spasms, I knew well enough to not overreact to developing new symptoms of a disease that’s supposed to do those things. I don’t think I’m victim-blaming here: MS is terrible and modern medicine is doing everything it can to advance treatments, but MS is a honey badger and honey badgers don’t care.

    www.nps.gov/cong/

    This photograph is not upside-down.

2014
01/20
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Don’t worry, I didn’t do any of the driving

Yesterday was a scary day. I got a lot done and made it to two different public events all while simultaneously existing in my own upgraded State Fair Funhouse Nightmare.

pennywise3

Though I begrudge its knowledge I’ve become accustomed to a certain daily “rhythm” — wake up, feel ok for a while, realize you’re climbing towards a plateau of gnarly, brace through plateau using as much normalcy as possible to maintain the invisibility of your disability, feel beginnings of clarity first in head then in body… then the worst is over and whether or not I emerge frisky or exhausted, the worst is over.

www.marriedtothesea.comEven laying down for a cat nap between functions didn’t seem to help. I woke with electric brain fizz (in the ilk that accompanied waking paralysis in the past) and assumed that I probably just needed a longer nap, but “oh well, it’s the holidays!” When wrapping a gift for the party became too difficult and began to induce tears I might should’a taken the hint instead of another dose of Amantadine. But “oh well, it’s the holidays!” I was an optimist and assumed whatever was plaguing me today would clear — the daily rhythm right?

In addition to having baked cookies the night before, I didn’t want to not show up with my wife at her new job’s work party. I clean up real nice, y’know? And I assumed whatever spell was offending would pass… late afternoons and early evenings are usually my guaranteed* times to coruscate, as far as cognition and mobility are concerned.

oregon-trail-2

In 1989 I loved 1848.

A spot on the sofa cleared in the first few minutes we were there, so I sat simply facing the same direction for the duration of our time there (somewhere between 1-2 hours). I listened to the unintelligible symphony of many different happy conversations taking place mostly behind my head; the upside to this was that when the Secret Santa gift exchange started, I had one of the best seats.

My vision was doubled and slow-moving, like the mouse cursor on a computer from 1989. I was unsteady upon upright with debatable motor skills for such public-setting-appropriate tasks as “holding a plate” and “correctly ingesting beverages.” The party was fun and the people were really quite genial — I do not regret going, because had I not I’d just have been sitting alone at home feeling bad, which we all know will just make you feel worse.

hdxhLast night was scary. On one hand, I was proud of my public staying power. On the other hand, I still started crying** on the drive home. Today is already better for not being as bad as yesterday, but I’m not going to press my luck any further. It is my goal to stay in bed today. “Nothing bad is going to happen if you don’t wash those pans,” quoth the wife this morning. It is written into our marital contract that I respect her wishes and opinions, and I wouldn’t want to let her — or the courts — down.

Woe is me?

———-

*I know, I know… MS guarantees you nothing like that.

** Crying isn’t something I do often — I live by the motto “There’s no good in giving yourself a sinus headache and a runny nose!” My wife told me to stop being so good at faking it, and maybe she’s right. I enjoy being good at things, ergo I might enjoy getting this kind of arbitrary one-up on a physiological condition I felt was attacking me. But still, last night was scary.

2013
12/16
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Falls — Noun and Verb

Issaqueena Falls

Issaqueena Falls

An uninjurious fall or two was a pittance of payment for a visit to [a small number of] the waterfalls of Oconee County. The park at Chau Ram was the first stop, but was gated until (as was posted) March 2014. Curses! The first falls to which we in earnest arrived just happened to coincide with my daily “spell.” They also happened to be the most treacherous (three words: “wet rocky precipice”) of stops my wife had lovingly researched the difficulty of. Had I not been in a state this wouldn’t have been a hard piece of nature to traverse — I grew up on a crik (“creek”), and spent a childhood learning the careful methodology of treading river river rocks.*

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[insert Blair Witch Project acid trip]

The Brasstown Falls, however, were a sudden stranger — autumn leaves plastered the small canyon and flickered around me like a Blair Witch Project acid trip. Hell, even Cowboy was scared of this one, and Cat thankfully took hold of both dogs while I focused on safe navigation with cane. There was a tiny spill over some larger precipice rocks, then one more full-body sudden descent into a soft, mud-n-moss capped hillside. I engineered that one like a pro. My Physical Therapists would have been proud of the implementation of their teaching; on the trek back I kept my gaze focused on the path before me (neck/body movements exacerbate symptoms), engaged my abdominals for stability and counted each footstep as though I were in one of their obstacle courses.

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spot the beaver dam

The next falls were easy-as-pie to reach, and stunning. The last ones we hit before dark actually never got found, but the walking was intense through, around, and under trees downed, tiny and low. It was an ambitious endeavor, but I felt more victorious than pained when I emerged without falling once on this trail.

I was glad for the overcast of tired rainclouds and forest canopy. Glad, too, for long stretches of time sitting in the same position while driving, for small town diners and gorgeous independent bookstores. Our dogs were thrilled with the entire day (in addition to hundreds of new odors to discover, they each got half a sausage biscuit and some boiled peanuts… it was their Daycation too).

that smile is my heart

that smile is my heart

What I come away most grateful with is knowing that, even when she gets a wild nature hair up her bum, my wife plans for the accommodations I need and keeps an eye on the terrain for me when I can’t control the movements of my own. She drew up the routes to all of these very-backwoods locations and did all of the driving… after making sure the kitchen trash was empty, my coffee pot was clean, the dogs were fed and other various preparatory tasks.

*… And also that most of the shark teeth and vertebrae excavated there came from the Oligocene epoch. The one bone fragment I treasured most I thought, as an amateur paleontologist, was perhaps an even more prizable fossil from the Plesiosauria family. Adult hindsight suggests it was a deer tooth from neighboring hunters.

2013
11/22
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A Fine One to Talk

no-earth-dont-spin-like-thatYesterday was the first time I tried to, but couldn’t, run. Literally — could not move my legs quickly enough to up my gait. Tripped every time I tried. Running suddenly feels scary. I’ll get over it. I was getting ahead of myself to think trying to run during an otherwise-delightful walk in the park wouldn’t result in any negative outcome.

On the heels of that up there, talking is now an occasional issue too. The physical act of simply talking. Cerebellar ataxia is a caitiff. Everything in the nature of myself and this world is trying to slow me down; I’m desperately trying to heed that message but feel the beatings will continue until morale improves. Therefore, I need a GRATITUDE ADUSTMENT:

  • I am grateful for winter’s illustrious excuse to use the oven. I have been baking and, lo, that is good.
  • I am grateful for getting bills paid.
  • I am grateful that the dishes are done, dinner is in the oven and my coffee pot is set for tomorrow morning.
  • I am grateful for a wife who is as brilliant as she is beautiful, and who loves me despite the slurred words.
  • I am grateful for the internet and all it has to offer, from blogs to butthurt.
  • I am grateful for brussel sprouts. You heard me.
  • I am grateful for patient payment assistance programs for the medications I need.
  • I am grateful that in a month’s time I will know whether or not my three-year wait for SSDI has ended.
2013
11/13
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Yeah, I’d hit it.

I'd Hit it!In my thirties the phrase “gonna hit that” means something entirely different than were I to have said it a decade ago. Now when I say “that” in such context I refer not to an attractive nightclub body but to the almighty plateau.

It came later than normal today — usually my “spells” start in the morning, plateau then end by 3 or 4. Today was markedly slow, but not worth an automatic pronouncement of “bad.” That came about a half an hour ago when I had to carry my laptop from the kitchen back to the bedroom and adjourn to bed.

I know it’s all gonna be a thing when I start having trouble putting the lids back on spice jars or difficulty handling soapy dishes. Other things I know to be mindful of:

  • increased dizziness (I’m dizzy 24/7 so “increased” is an applicable modifier here)
  • decrease in eyeball movement
  • missteps and/or falls
  • heaviness of limbs
  • cognition skips (kinda like a record doing it, yeah)
  • slurring words
  • angry, nonsensical hunger (wat.)

So this all can have me come off as drunk. As a drunk. anigif_enhanced-buzz-9529-1381006799-11

When whichever symptoms picked from the hat finally reach a plateau (ie, “maximum level of suck”), I will generally feel closer to my baseline — exhausted, but better. I am occasionally heartened to feel it get really terrible, because my motto for any and all MS-related oddities is “It will pass. It always passes.” At its worst I know it’s nearly done being an awful houseguest; I will feel better soon, and if I am spent — hell, staying in bed now is almost culturally normative.

Silver linings, right?

1950s-Woman-CookingWell, dinner is cooked and waiting on the stove (the wife is out of town today and will be home late; I wanted to make sure to have a meal prepared that would be fine after waiting on the stove for her arrival home). The coffee pots are set up for the morning, the living room was dusted. I marinated kale for morning egg-sadillas* and prepared a cucumber salad with home-made vinaigrette. All of this was accomplished without injury, too — no butcher knives into fingers, et al.

Now it is apparently bedtime — different, mind you, than “going to sleep.” Now is when I do stuff here.

 

*We have fallen in love with taking breakfast’s scrambled eggs and introducing them to tortilla-living with cheese and minced/marinated kale.

2013
10/18
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Discombobulation: The Silent (or, at least pretty unintelligable) Killer

Judging by this one thing on the internet that I’m not married to the veracity of, the chances on experiencing “disorientation” jump dramatically from your twenties to your thirties.

Untitled-2

I during my twenties considered myself aging like a properly shelved fine wine, not like a jar of mayonnaise that was left outside in Al Aziziyah, Libya. Hindsight is confirmation that for me cognitive difficulties have matured over the last several years. A large part of my day is now spent sitting wide-eyed recounting what I got done since I woke and what else needs to be done. Usually the wide eyes stick and I am lost in the downward spiral of feeling overwhelmed by all the things I’d like to be taking care of if

  • I wasn’t so dizzy.
  • my legs weren’t so heavy.
  • it wasn’t so hot outside.
  • my eyes would calm down.
  • the fatigue wasn’t inwardly crushing.

There are the “easy chores” that make life more tranquil by benefit — setting up the coffee pot for the morning, washing the dishes, wiping counter tops and cooking (cooking isn’t always necessarily easy, but more often a beloved meditative practice). After the easy stuff’s done I can check in with myself; sweeping and laundry would be next on any good housewife’s list but both require certain bending postures that are difficult to come out of. Keep adding to this list any chores or household/financial chores your day might normally require.

At what point on that list do you get a wide-eyed stare of disconnect as though your brain is a breaker box whose circuits just flipped the house dark?

Were I to micromanage the time as I am want to do with all the details of all the things, I don’t know if I’d be able to give a specific answer to that question. I do know that sometimes while my “computer” is rebooting it helps to simply think about happy things; while there is even the smallest moment of limbo between doing- and raging-against-what-is-unable-to-be-done I have the power to reset the attitude into which I went into the breaker.

GRATITUDE ADJUSTMENT

  • I am grateful that I have gotten things done today.
  • I am grateful that I’ve been able to cajole Cowboy into sticking around with me on top of, instead of underneath, the bed today.
  • I am grateful for music of most kinds, but especially this current station on Pandora.
  • I am grateful for a working computer

    Dark Devil's Food with Cream Cheese/Dark Chocolate Peanut Butter Cup Icing

    Dark Devil’s Food with Cream Cheese/Dark Chocolate Peanut Butter Cup Icing

  • with working internet access.
  • I am grateful that this morning my wife brought me coffee in bed…
  • along with the last two pieces of birthday cake for breakfast.

Oh yeah, me. The day actually started out really nicely — channel that feeling instead of the daily dread daze. There is still daylight and I will get done the things that need to be done today. Not only was I brought my morning coffee from downstairs, it came with cake. Now that is the perspective in which I should keep all of the details of all of this day.

2013
06/13
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Not Always a Wish Your Heart Makes

redsoul

“Red Soul” ©2009

One of the many positives about moving from Betaseron to Gilenya has been the return of dreams. I started having flashes during the day of images from the night before; they were just flashes. There was nothing to remember other than Omigod, I must’ve had a dream last night! 

It’s been about three years since I’ve been able to recall a dream. Over the last couple of weeks the flashes became faces and the faces became segments. So far two of the three of these segments have been about being unable to read well. In the first, I received from my best friend a gift membership to a book club and fretted over how to tell her I haven’t been able to comfortably read a book in years.

As for the second dream I remember having in the last three years, it too was about not being able to read well. For some unbeknownst dreamy reason I had Google Glasses, which made me feel super trendy and financially secure… until I turned them on to a smeared, blurry internet. I couldn’t even read the internet now?

Wow, psyche. Sending messages? Listen here, I know this is one of my worst fears slowly coming to pass but that doesn’t mean it also won’t pass me completely. Near completely. Of all the terrible things that have, and could, happen to me over the course of this stupid disease nothing has or does scare me more than losing my vision.

295614_10201458442490056_1160374636_nI can’t read blocks of text properly, comfortably or well. I’m only slightly colorblind now. I have accommodated myself well enough to still believe I am an artist and can call myself as much. I am trying to write more — as much as I can — and now my fingers are having a little difficulty navigating the keys. This could, in tandem with losing some of the vision in my right eye, be enough to alarm me to inaction.

I recognize this and ain’t nobody got time for that.

Do you know what being scared is now a red flag for? It’s a red flag that tells me with a friendly wave that I need a

GRATITUDE ADJUSTMENT.

  • I am grateful to be having and remembering dreams again.
  • I am grateful that one dream was about hugging a friend’s mother.
  • I am grateful for even the nastiest places from which I’ve come because those places have provided a lot of creative inspirations that won’t run out any time soon.
  • I am grateful for the emotional and financial help my parents give me.
  • I am grateful for the so many good ways in which my wife has changed my life.
  • I am grateful for my wife’s work ethic and the love she has for her work.
  • I am grateful for Cowboy! All the time!

    bzzle

    Cow to the Boy!

  • I am grateful for incredible friends.
  • I am grateful for firefly synchronization, and
  • Grateful to be going with my nieces soon.
  • I am grateful for my ravenously smart, strong and wild nieces.
  • I am grateful for my big brothers.
  • I am grateful for this avenue of keeping an accountability journal.
  • I am grateful to you for reading this; thank you for being part of what’s making me feel a lot better right now.
2013
06/06
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Abed with a blank canvas

sick-in-bedThird morning of waking up feeling ok then having to go back to bed within 30 minutes. My first reaction is to be pissed. I mean, just look at this marginally unkempt kitchen. There are at least eight dishes in the sink and those counter tops aren’t wiping themselves down.

Yesterday I didn’t have the energy to roll over and open mail. Today I am sitting up. That’s one for the plus column. There are potstickers from Trader Joe’s® in the freezer, dumpling sauce in the cupboard and cooked sesame cabbage in the fridge that didn’t get eaten yesterday because my yoga instructor wife picked up an extra class last night. That’s dinner today I don’t have to cook. There’s brown sugar and cinnamon steel-cut oatmeal ready on the stove downstairs. I have a full cup of coffee upstairs that I can almost taste* again. There is unlimited tv on the internet to match the unlimited number of things I could accomplish merely by sitting in bed (we won’t rosesname names, Unfolded Laundry). While sitting in bed I could lament the things that I can neither reach nor feel the mojo for fixing, or I could look at the beautiful roses my wife brought me yesterday when she came home between classes to cook lunch. That’s an easy baker’s dozen of reasons in the plus column, and only one nagging one in minus’ side.

Sitting in bed gets boring and makes a natural type-A like myself go a wee bit butternuts, but at least I know I won’t self-medicate the petulant child in me with food. Anosmia is a good dietary impasse when all you want to do is savor that chocolate truffle you got yesterday with the roses. Hold on, let me pause for the pertinent asterisk from above:

*It’s probably best I don’t cook dinner when I can’t taste anything, n’est-ce pas? 

250px-Shape-MITYeah. And I’ve been fortunate to not have had to; granted I still want those truffles. Oh, I will have those truffles. But back to anosmia and back to anosmia in relationship to synesthesia. When I do smell (which is generally ALWAYS), those smells are accompanied by specific shapes or textures. Cooking is nearly a painting — every flavor is an object in a composition and the final product needs to be a balance, beautiful canvas. I do not tolerate high, sharp spikes in my dishes, nor should the final product be too concave. When I can’t smell, part of the inside of my mind (does that make sense? this is yet to become easy for even science to explain) sits like a dark movie screen. Am I mixing too many metaphors yet? This is awkward to explain because there’s not a lot of applicable language to describe the sensation of “smelling a shape.” Sometimes the esq-school-lunch-kid-081511-xlgshape or texture will have a color, sometimes I just feel [something like] sandpaper on my forearm. Sounds and smells both get this strange neurological treatment. I remember being administered a word association test in the first grade that seemed to me like the stuff of tests administered in bad dreams. Obviously this was the first grade and I can’t cough up a lot of specifics, but what I remember is being asked to say the first word that came to mind when another was said. I remember being confused and unable to answer; this was a big ethical dilemma because I felt forced to lie. A word would be said, and I’d “see” a shape or color or a texture. I finally felt the most honest way I could respond was by answering in colors. I remember saying the word “blue.”

chocolate-truffles-bIn summation, I would really like to taste those truffles. I bet in addition to releasing pleasure-inducing chemicals into my brain, they make beautiful pictures. Truffles have that kind of artistic genius.

2013
05/10
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Get up.

The Daily Gamecock

Proof of being out of the house courtesy of The Daily Gamecock, USC’s student newspaper

3/26/13: I’m going to pretend that the one hour interlude didn’t happen last night, because other than it I slept deeply and well. Then I never really woke. All day. There was a lot of feeling trapped and lazy, but I got to throw on clothes and make it out to the state house grounds for an equal marriage rights rally. Seeing friends was a fantastic stir in the pot of my brainmeats. For my brainmeats were not delivering at their righteous pace (which would be of little notice in a large crowd).

I did sweep the bathroom.

IMAG0142 (1)

I kinda just wanna frame it. Packaging and all.

3/27/13:  I’m going to pretend that the one hour interlude didn’t happen last night, because other than it I slept deeply and well. And I am sitting and trapped, looking at all of my surroundings with confusion. Am I just overwhelmed? No, I really do feel confused. Now to not feel angry because of it, therefore beginning the terrible spiral which will ultimately end in relentless anxiety. I can enjoy the cherry on what cake yesterday delivered: the best $1 foam puzzle ever made. I now own it, though I surely contemplate the safety of giving so many small parts to a child. Fish anatomy is very important to small children, though. I don’t know if my older niece would be excited or mortified.

There are more than plenty things to do. I have already done aerobics and drank a B12 shot with my coffee; where is my energy? Can I not even rely on external sources now, body? Don’t be overwhelmed. Just get up and do one thing. You know if you get up and do one thing you’ll be too anal to stop doing things even if all your body wants is to not be upright. Your legs are not the boss of you. Cog fog is not the boss of you.

Get up.

2013
03/27
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base·line /ˈbāsˌlīn/ n. – A minimum or starting point used for comparisons.

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To be clear, I am not a fan of the show LOST. Other than this guy because of this one line.

Yesterday was wonderful because I got to spend almost all of it at Baseline. For me that still means a constant transformative dizziness; my “normal” makes the world around me a carnival ride I’ll never again leave. But at Baseline I know how to live in it and I want to live well, damnit.

3/18/13 – What I got done:

  • A sink full of cans and bottles was rinsed/readied to be put in the recycling bin
  • Kitchen tidied/swept
  • Crock pot of chili made with fresh sweet peppers
  • Garbage changed and garbage can taken to curb
  • Dishwasher un/re-loaded and running
  • Three different coffee pots set up for the morning
  • Dogs fed/Sick dog nursed
  • Rice made
  • Foyer (below stairs where it’s hard to reach) swept
  • Living room dusted
  • Clean couch cover replaced from wash
  • Bathroom swept/counter clean
  • Towels washed
IMAG0050

The best kind of eye pillow.

…There was a terrible thunderstorm and within 30m of the power going out, I was asleep (re: Gilenya). This was probably shortly before 10pm. I woke up from 3:20-4:45am to reset the computer.

All of the electronic clocks remain forthcoming at noon at 3/19/2013. Today Cowboy sees the vet because Benadryl and buffered aspirin have helped as much as they want to and I am not actually a vet (surprise!). I am scared for his well being far more than I am scared for my own right now. Besides, I think I’m close enough to baseline that I should be doing something other than sitting beside him. Although all I really want to do is hold him, it won’t dress me for leaving the house.

So far today I’ve made two doctors appointments for myself and worked briefly with clients. Thank goodness I’ve got these set — last night during my awakefog, I scrawled the word “ANXIETY” in blue pen over the earlier-scrawled Sharpie reminder “CALL DOCTOR.” I remember writing the first word to remind me of a presenting symptom that now might take precedence over the Gilenya side effects. I mean, I expect some palpitations and this sleepiness is ok at night (as long as it continues to ebb) but the anxiety is a multiple-times-daily thing and it affects everyone around me. Right now that’s mostly just my incredible, talented, smart and beautiful wife (you reading this honey? ;-).

2013
03/19
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