Posts Tagged ‘ bladder ’

Sweet Lord, it’s Been a Minute

I suppose it’s a time-honored tradition — 12360130_10153881975963028_4719306674604972142_nfeeling like you’ve gotten a lot accomplished, then sitting down and realizing the messes around you still exist. There are gifts to wrap in a messy room where the tree’s not yet up. The dog suddenly has to go out. Then the cat wants in. It’s time to switch the laundry, too — but an hour in the kitchen doing dishes and making tonight’s dinner invariably leaves me weepingly dizzy. I would be proud that the chicken soup for tonight couldn’t be more lovingly home made, but instead I look around from a wobbling visual field at everything left yet to do. This happens every morning… I’m recognizing as a pattern that my late mornings and early afternoons are currently kept as the property of Desperation.

I also know this pattern can change any time without notice, or that “spells” might last longer, or occur at other times TBD.

But let’s not focus on the maudlin after so much time apart.

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Reading my 2 haiku at the premiere

I’m designing a great many book covers and picking up volunteer work where it appears (follow me on Twitter!). I’ve been writing hundreds of haiku, and had two published for Poetry on the Comet — a project headed by the city’s Poet Laureate to place poetry on city buses. It’s exciting to be writing poetry again; now I just need to pick up a pencil and make myself start drawing (not only do you lose it if you don’t use it, but I stopped doing a lot of things I loved and at which I seemed good when I lost the ability and admit to now being fearful of trying. God it feels good to say that out loud though.)

12196103_10153148064583038_400264783271040078_nI’m not only still walking without a cane, something amazing and unexpected happened! Walking had become a great deal easier, but only at a a slow-moderate pace. Notching up to a jog was the hard limit my legs would not seem to move past (so to speak). My feet would fail to understand the concept of lifting, then returning to the ground in the same direction once speed and accuracy came into play. A couple of weeks ago we were again walking the boardwalk at the Congaree National Park; my walking speed had increased, so I gave jogging another try. The jogging turned to running and I kept going until breathlessness got the better of me (about 1/8m because I am only so fit). But holy Jeepers — I don’t remember running since I was young enough not to be obese yet. So congratulations to me on this, but I know I need to keep doing it now that I know I can.

The bladder? Still a thing. Did you know that Urogynecology is an existing specialty? Did you know that when they’ve reached a crossroads in treatment, they can refer you to a pelvic floor physical therapist? Because 3j5z6that also exists. Though on medication for the frequency, I’ve still clocked 49 bathroom breaks on a 48-hour period; the physical therapist has gotten me from 25 to 15 breaks in a day. The power of Zen is strong with me — even moreso because I’m getting a bit more sleep than I have in years. I have had dreams again! Only two or three, but it’s enough to let me know that REM sleep isn’t a totally absent part of my night anymore.

And now that sitting and facing the same direction for an undetermined amount of time has let ebb the worst of the dizziness and motor skill loss, it’s time to fold the newly clean laundry. Then I’ll put it away and sit again, then I will get up and take out the trash and sit, then I’ll get up and do something else which will be unfailingly punctuated by more sitting and not turning my head.

I can run. I can dream. I got this.

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Walking Vision Photos

Accidental selfie is accidental

Accidental selfie is accidental

Of course it’s going to get difficult and uncomfortable, but there are benches galore along the path at the Riverwalk and an unlimited number of natural photo ops while on those benches. The camera can capture on what my eyes won’t be able to for the next several minutes. In the meantime, while my neurological self bemoans its tough time, I know that my actual human body benefits from the aerobics.

With respect to the moments I can’t walk on or see, please enjoy these photos — they were all taken while my vision was spinning/doubling/blurring. I still consider it largely unacceptable to not appreciate what’s around me, and I was excited to see how nicely a couple came out.

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In the last two days I’ve walked over 3 miles, and for it I get beautiful photos. Things get bad for a while, but just look at what beauty would’ve been wasted on me without a few snapshots. I guess this is my official middle finger to the deep-seated fear of losing my vision. My middle finger tries to keep it classy.

More Good Than Bad

Rare photo of me looking up -- I don't always get to see the sky now.

Rare photo of me looking up — I don’t always get to see the sky now.

I’ve gotten so used to waking up every hour every night to use the bathroom that I’ve also become used to waking up a little mad about it. This morning called attention to how unnecessary it is to wake in a defensive mode of any kind — without, of course, knowing right away that I’d just gotten three solid hours, and before the natural body scan that consciousness presumes, I was angry.

That’s no good way to start any day.

Especially when a few minutes into cognizance I can hear my body say, “Oh, actually we’re kinda cool now.”

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My route is highlighted in pink.

High-five, self! This is the first morning I’ve woken feeling “alright” since a huge walk happened at the swamp. In retrospect 2.7 miles was a bit much, but I DID IT. My body’s cooperation was unexpected and celebratory.

To be honest, most of Sims Trail was a legless zombie kaleidoscope, but downed trees make for great benches in the forest… and once you’re on Sims Trail the only way out of Sims Trail is to reach the other end of Sims Trail. Even when most of my physical body wants to stop responding, it cannot argue simple facts like that; I knew that I’d be proud when we got back to the car (and I’d then be able to sit facing the same direction for a half hour: best reward ever!).

I am enormously grateful for this amount of physical activity.

I am grateful that we live so close to such a beautiful natural preserve.

I am grateful for autumn, which allowed me to leave the house and sweep my porch for the first time in months.

I am grateful for every Wednesday’s Assistive Yoga class — every week I have taken the ground for granted until 20lbs of sandbags are on my seated legs. Every Wednesday, I feel the ground; every Wednesday, I cry from joy.

408750_10151076227563038_576618541_nI am endlessly grateful that my wife introduced me to this class, and even moreso that it exists in our city.

Beyond grateful — ecstatic, really — that our NY State marriage license is now applicable in the place we live. And what else, you ask? This happened just in time for our two year wedding anniversary.

Back to “Normal?”

10257888_449536621856637_6247820382380385259_nIf we expect a certain amount of utilitarianism from ourselves, the very nature of what we view as normalcy is inherently exhausting. Adding a fine ganache of cognitive dissonance to the matter is understanding the specific differences between “should be” and “is.”

I should be able to accomplish all of the things I have on today’s list, but it is 2pm and already too hot to go outside to take out the trash and water the flowers.

Okay, how about that dirty kitchen? You’ve got prepackaged dinners from the Indian grocery that make actual cooking unimportant, so you should be able to get in there to wash those few dishes, reset the coffee pots for tomorrow. Oh, and sweep then mop if you get the chance. Have you finished cleaning out the freezer from that exploded soda? Tsk, tsk (you should really do that). And  the clean out the fridge since you’ll be taking all the garbage out later when it’s not too hot to roll our bin to the curb.

Or while you’re sitting here contemplating existence in drift, why don’t you fold/hang up those two loads of clean laundry (you should really do that)?

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“Performance Sheets?” I scoffed at first too. Then I slept in them.

You should really change the sheets, too. Just sayin’, Lady Diaphoresis.

At the very least, you could be using your day in any number of more pragmatic ways. Start with a backtrack:

…Replace “I should” with “I’d like to.” I’d like to Marry Poppins this house into a shining castle of itself because it is in my nature to succeed at that very goal. I’d like to wash those breakfast dishes* but first the clean dishes need to be put away.

Wait, wait… backtrack a little more…

MaryPoppinsI’d like to get a wide variety of household chores accomplished. In order to accomplish any of those things I have to come to terms with not being a ficticious, umbrella-riding nanny.

Sigh. Alas, life is not fiction and never have I boarded a parasol.

That, um, having been noted… go turn on music and clean for ten minutes. Take an actual, honest-to-gumdrops break that includes sitting down… then clean some more. Repeat as necessary.

 

 

*Hey, you made breakfast? Gluten-free peanut butter pancakes? Wouldn’t you also like to pat yourself on the back for that?

Yakety Yak

514_400x400_BoardThis morning in the “new” bedroom we woke to mustardy cat yack, turds* and hairballs that looked like turds. 3 of our 4 pets were involved with the misgivings — the one who wasn’t was the one who acted guiltiest (and loudest). Everything is now in the wash, coffee has been drunk and it is time to shake off the night.

Well, night-ish. There’s a letter going to the urologist with an update for my records, as well as an apology for being able to afford neither another office visit nor the medication that costs $300 a month but showed no signs of efficacy after the three weeks of samples. Right now I’d find a way to pay $300 for something that allowed me to fall asleep without worry of wetting the bed (the very one we woke up to this morning featuring unabashed cat purge). The terrible irony of a bladder this spastic is that laying down makes it markedly worse. Now at bedtime I anticipate 10-minute-max periods of rest before I am summoned as though under demonic possession to a toilet; I take a melatonin and pry it kicks in within one of these windows. It is the worst to be minutes from the delicious relief of consciousness and to have to raise your entire sandbag self from bed over and over again.

download (2)This Sx is one I didn’t anticipate so much while embroiled in the worry of things I could better understand — blindness, wheelchairs, et al. I’ve become more than familiar with the arbitrary absurdities of this stupid disease and my phrase of comfort during the worst times has been, “It will pass. It always passes.” That little haven of words is currently being washed out slowly with an ounce or so of liquid at a time.

This is awful, but I can focus on the happier things — there are always happier things. It’s been (approximately) three years since I first bit the big pride bullet and applied for SSDI. After several appeals and securing a lawyer I was finally… assigned a judge. Not a court date, just the judge… but that means the court date is coming and soon will be my brightest chance of convincing the government that I couldn’t possibly make all this up.

And that light at the end of the tunnel feels good.

And light at the end of your tunnel is the best silver lining.

 

 

*Cowboy, that rug with the leaves on it is a poor substitute for actual outdoor grass.

“But a good day’s a good day no matter what.”

“Some days are good, some days are bad and some days don’t happen at all.”

Today is one of the latter. I’m not back to the urologist for a month… and two weeks seems a lot to be “as little as” waiting for the Toviaz; one apt example of my aggravation is standing up, and before reaching the bathroom door I had just entered moments before, needing to turn back around and go to the toilet again. I’m in my early thirties and have had no children so you can see how I’d consider this behavior redunk even from the Pentagon.

potty-trainingThat being said, I have been able to get much less sleep than I’d normally like. That means increased asthenia and fatigue — even still, I washed the dishes, cooked an easy meal, showered and hung up laundry.

  • I am grateful for the things I did get to do because even boring idle chores are more interesting than laying down all day.
  • I am grateful for a working computer with a working internet connection.
  • I am grateful for dafont.com
  • I am grateful that my latest artwork series finally solidified itself.
  • I am grateful for Cowboy, who has little issue staying beside me on the bed for hours.
  • I am grateful for my wife, who totally married me.
  • I am grateful for a cooked meal on the stove.
  • I am grateful for clean dishes.
  • I am grateful for the vision I maintain. Actual vision, not the pretentious artsy kind.
  • I am grateful to have finally put pride behind me so that I could put a cane in my hand. Wow, it helps.

spoons soviet 002And I am grateful that I could — even on an otherwise “Nothing at All” kinda day — pull 10 things out of the air that show off all the clouds’ silver linings. I used to be the kind of person who wouldn’t even say something so corny as a joke, but I also used to be a very unhappy person. Now instead of gagging me with a spoon, I proffer simply putting more in my back pocket. Soon my wife will be home from work and a few hours after that I will try sleeping again. I also hope to foresee a future wherein I will not need to blog about “downstairs” issues so much… you cross your fingers and I’ll keep crossing my knees!

Meanwhile, what are the ten things you’re grateful for today?

No really, you bladder me. (or, “TMI, MS!”)

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I have terrible penmanship in the dark as well as in the light.

If pee is TMI for you I suggest moving on from this post. Otherwise please know I have no standard cultural shame when it comes to openly discussing health issues; I was born into two generations of RNs, I’ve been a sexual health educator and worked briefly in the adult industry (as a graphic designer). There is precious little that makes me uncomfortable, but I bet you $50 I know or have seen something that will make you squirm. Please do not consider that a challenge, and I apologize if any squirming is already happening.

After 48 hours I am officially retrained to look first for the chart thumb-tacked to the wall beside the toilet instead of the toilet paper. I remember having some issues with my bladder as far back as my over-a-decade-ago trip to Italy; today I have a knowledge of most working public restrooms in my current county of residence. This is to say, I have to pee a lot.

Well, tell us — we all have to know how often do you try to not fall off a toilet in two days, Kathy!

The answer is a resounding 64 times in 48 hours.

Long have I referred to the imagined geometrical shape between my legs as “The Pentagon.” What goes on there is highly classified and information is on a need-to-know basis; I have a marginally lower clearance than Colin Powell when it comes to knowing what plans are being hatched in my drawers. Though there were painful nights of a resounding, shearing pelvic paralysis between the ages 12-15 years old, I didn’t start menstruating in earnest until I turned 20. After that it was irregular until I started injecting Betaseron at 28. I now very rarely wake into needles that cut into my panty line like thousands of slicing knives. Coincidence, my uterus.

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de-briefing

I’ve got easier access to intel from my bladder. There’s always chatter — it actually never seems to shut up, and while I appreciate the transparency from this office in the agency there has to be some easier governance here. I’m thrilled to be addressing this issue somewhere a little more effective than a blog (at a doctor’s office), but it’s hard to not want to brag a little about one’s treatable freakishness.

It’s also important to note that the Pentagon does such a good job at hiding things from me — its Pub(l)ic — that when I walked into the Urologist’s office to discuss medications and seemed surprised to be asked to undress from the waist down, the nurse laughed and said, “Well if we told people about [being catheterized], they’d never show up!”

Well played, Pentagon. Well played.

I thought back on my time in the adult industry and tried to channel hilarious memories of seeing this horrible thing done for fun and money; then I was sad for those performers who were by now most certainly in diapers, but not for fun and money. By the time this entire disturbing dissociative reminiscence had completed, so had the catheterization. Ok, ok. Could have been worse. The doctor wasn’t cackling maniacally or anything.

I’m done keeping a urine hat journal, have a leftover urine hat in the bathroom and I’m into the first day of Toviaz. I could see improvement “in as little as two weeks,” reads the sample package. So looks like I’ll only have to pee “as little as” 448 more times before this evens out. If I just pretend Toviaz is the Congress to my Pentagon the numbers seem to make more sense. Whatever it takes to keep the Pub(l)ic calm.