Archive for the ‘ baseline ’ Category


“I have had a better hold on my symptoms for the last several months,” says the silver lining proudly. And for that I am proud, and I am grateful. Things started getting rougher right around Christmas, culminating in a full week of the kind of daily pseudo-exacerbations that really make one tickle the chin about needing the prefix “pseudo.”

air-stone-2The end of last week began seeing the escalation from moderate dizziness/clumsiness to the kind of fishtank-aerator-inside-the-body level of disability that brought me more than once to tears. Yesterday was less severe a day, so it gives me hope for today being a better grasp at baseline.

Monday I fell out of the chair at my PT’s office. Went to sit, ass off-center just enough to pivot the seat with my body towards the ground. My arms are still luckily quick to respond, and kept me from eating the trash can. I don’t know whether to be embarrassed or glad that there was a witness.

Despite the best efforts of Urogynecology, Pelvic Floor Physical Therapy, Myrbetriq, and even (physician-recommended) Dr. McGillicutty’s Wand for Female Hysterics, I am still sleeping poorly. My bladder wakes me up 3-6 times a night now — an improvement over 12+ times each night, but doesn’t address a now infamous inability to go back to sleep after stumbling across the hall. No matter how tired I am or how many bubbles are rocketing through my extremities.

But today is better than yesterday, and I netted 6 hours of sleep (in various lengths of time) last night. Despite a bad week, I worked with clients and even picked up a new one. I am trying to move away from carbs to vegetables again (it was cold and festive for a while, damnit). Tonight’s dinner was created with less difficulty, but all the love: broccoli soup from scratch for optimal cruciferous goodness.

That is why the house smells like farts. The soup. Really.




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.


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.

The Cognitive Dissonance of Finding my Legs

To aid my nearly-complete pepperonicovery here is a list of 2 things that, when I realized were different, blew my mind a little:

shocked_owl1. Unlike New York last week, the weather had not called for layering tights or long underwear under pants. Stepping off the plane in South Carolina was a bit warmer but still with a strong, crisp breeze. Tired get-out-of-the-airport mode was in effect for both Cat and I, and we trudged to then with our luggage to the parking deck. Steps from our car, I stopped. Were there pins and needles happening in my legs? There were pins and needles, damnnit, for the first time in now weeks… holy crap, that meant I had no pins and needles the entire time I was walking city blocks in Manhattan. Something about the shape of these pins and needles was denser and less regular. Usually pins and needles feel like a constant moving pattern of minute silver lines. Synasthetic response here aside:

In that flash of a moment I realized I was feeling the cold air, and I was feeling the actual fabric of my pants flapping, striking my calves.

bear-negotiationsIt has been years since I could feel anything on or with my legs, which ensured a sudden cameo by cognitive dissonance. It was difficult to understand and I had to stop to process this otherwise normal sensation. I am almost afraid to accept this as a new normal because what a PITA it is to jump between different constructs of reality.

But this sensation keeps returning, and I can’t argue the fact that the only pins and needles my legs have felt in weeks are the small reminders of numbness lingering in the toes of my right foot.

giphy2. After arriving home tired after a long night of errands: It had been normal for Cat to pull the car into the driveway, turn off the engine, and for my heart to sink at the prospect of having to then to get out of the vehicle. I had become used to the forced hoist of a body I couldn’t entirely control. Getting up from the car seat was a body trial. Once upright I’d need to fall backwards just enough to catch my calves on the door frame to reaffirm for my feet which direction I was facing and to give my legs the order to walk.

I got out of the car last night, not thinking, by swinging my legs out the door and popping right up, turning to the left, and walking to the front porch like any ole regular person. Here another realization literally stropped me. I stopped to wonder at this seemingly tiny change, and to be grateful. So grateful. A small change in routine is not only wonderful but affirms that I still live in a body that owns ability.

Add the two above moments of clarity together, add a dose of 500 caneless subway stairs, and holy moly. I hope sorely that this improvement continues because a year ago I used a cane and every step I took hurt. I am 100% ready to never again have a neurologist to perform wheelchair charades as a premonition for my future.

I want to keep feeling grateful.

Good News v. Bad News (SPOILER ALERT: “Good News” wins)

BAD: Today I am fatigued and mostly in bed. Of course that still happens, and of course it happens after…

GOOD: Yesterday I spent three (three!) hours walking around a festival of local artists and artisans. Finding a seat was the last thing I did, as there were aisles to roam up and down. I was able to walk in a multitude of directions with no cane. The dizziness was tolerable — nearly a first in this sort of situation.

Can you see why these changes are rocking my world?

Can you see why these changes are rocking my world?

GOOD: But not a first, because at a grocery this week I noticed halfway through the store that I could see things around me. I have become accustomed to my surroundings transforming into a hyperspace-like blur of lines that travel parallel to whichever way I head. I am used to stopping at the colors of brands and logos I seek and remaining unable to focus my vision on anything (I’ve been known to come home with liquid dryer softener instead of detergent, conditioner instead of shampoo, etc).

BAD: Our car was unexpectedly held four days for repairs.

GOOD: Borrowed a pristine Corvette for four days.

LouLou tried on Cowboy's sweater. Neither is comfortable with this.

LouLou tried on Cowboy’s sweater. Neither is comfortable with this.

BAD: This week there was a visit to the vet, a call to a plumber and the car is in surgery until Wednesday.

GOOD: Still able to shop for gifts.

GOOD: There is a pile of gifts to wrap sitting in the bedroom. BAD: Oh, but laundry to fold first.


GOOD: We have clean laundry.

GOOD: The dishes are done, dinner’s on the stove, and other work is 50% complete. All I really have to do for the rest of the day is fold laundry and wrap gifts. I can tell my body’s not at 100% right now, but there’s been enough time in the day to accomplish everything without overdoing it. I know is that this fatigue is because I was able to spend yesterday doing something I haven’t been able to in a very long time… and that feels a big chomp better than this fatigue does desperate.

More Thanks to Give

dude-you-smell-freshToday I didn’t use my cane. Today I didn’t need to use my cane. Today I actually didn’t even remember I needed it. I walked around the property with a yard crew, getting feedback on their progress and possible repairs — we’ve got a big yard, and though landscaping was once a fond hobby it’s not something I can really do like I used to. It was nice to look around at the improvements — in fact, I moved all the flower pots then swept the front porch and walkway. I went inside and baked brownies. I cleaned the bathroom, did some laundry. I washed the dishes and fixed dinner. I took a shower, sat down, looked up, saw Kanedinsky. It wasn’t until the end of daily activities that I realized how much better I moved today — and that I did everything without any assistance. I didn’t have a “spell” today. I don’t even remember the last time a day passed without one. I was able, therefore, to change directions more easily which aided a level of productivity rarely accessed. Tonight I will fall asleep thankful again. It’s a damn nice feeling.

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.






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.