Posts Tagged ‘ anxiety ’

Musical Medical Chairs (+GRATITUDE ADJUSTMENT)

This is still a big problem.

This is still a big problem.

Because my neurologist’s office makes a big point about not switching doctors within the practice, I’ve just been needlessly detained for weeks while they keep losing paperwork sent by my neuropsychiatrist that details why I need to switch physicians. I don’t know what other practices are in the area, but it’s time to check. I need to sit and write a complete history of my time under the care of this physician. I lost a year of my life and gained “many new” brain lesions under his lack of care; he made “using a wheelchair” gestures to chastise me… for not receiving care that his practice withheld. Most recently, I made the choice to not go through the Gilenya all-day First Dose Study because, after having gone a year without treatment, I was still not receiving a time or place to do it. I just started taking them on my own and, good news!, nothing bad happened. I have been my own physician for longer than any layperson should, and many of the physicians I have trusted with my care have fallen farther than short.

Don’t get me wrong — The Wahls Protocol is still remarkable, and the changes are still epic in my book. A warm day this week, however, was a polite tap on the shoulder from my nervous system after which it took an entire evening to recover. A sudden loss of motor skills and cognitive slowing almost seemed foreign (almost). Summer reminds me that it is no chump and can still best me.

But end of rope reached (before anything really bad happens!? Go on, girl!) and I need to look into finding physicians.

In the meantime, there’s laundry to fold, dinner to make, and a house to clean. Maybe before I even do those things, I need a full-on GRATITUDE ADJUSTMENT:

I am grateful that my health is, in many ways, better than it’s ever been.

I am grateful that I feel like I can have a productive day.

Back center in the red wig: I was going to marry that musician.

Back center in the red wig: I was going to marry that musician.

I am grateful for my incredibly talented wife; I get to be privy to her private home rehearsals as she gets progressively more amazing as The Witch in a stage version of Sondheim’s Into the Woods. (I fell in love with her after the first time I saw her on stage several years ago. But I didn’t say anything to her then because she just looked… so above me, y’know? Without costume, I didn’t realize the waitress I seemed to hit it off with was the same siren that left my knees weak months earlier.)

I am grateful for kale chips.

I am grateful for a fridge full of produce.

I am grateful, now that summer is here, for Sheex®  on the bed.

I am grateful that my mom is recovering from her second knee replacement, and even more grateful that my dad is there as caretaker/cook/landscaper/houseboy. 🙂

I am grateful that #MindsOnMain wass successful enough to become an annual event!

I am grateful to have had the time to begin creating book covers!

11020769_10206485101228382_3872190026647930666_nI am grateful for great new housecleaning music

I am grateful for Cowboy, despite his new aged persona named “Lord Grumblebark” who appears only when Cat has been out of the house too long (after-work rehearsals) to release a litany of arbitrarily-timed woofs from the very pillow on which she will hopefully soon again lay her head.

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Rice to Meet You!

IMG_20141012_163934

What this seemingly serene photograph belies upon sight is just how much is hidden underneath. I had been sitting in the kitchen with the day’s first cup of joe to prep all of dinner’s ancillary (but critical!) ingredients. I finished and had on one cutting board all of the minced garlic, onion, celery and jalapeno last night’s jambalaya required. It was all just about to go in a pan together as the meal’s first defense of flavor, running a delicious reconnaissance to ensure the proper endgame for any meal.

CRIME SCENE PHOTO

CRIME SCENE PHOTO

Why did I decide to get the rice down from the cupboard instead of first, like any system of logic would ascribe, moving the items on the cutting board? I’ll never know the answer to that question.*

I’d been having kind of a rough morning, and after moving from counter-to-counter in the kitchen I needed to stop, sit, and face one direction for a few minutes instead of getting a 10lb container of rice from the top of the cupboard.

This is how we learn.

I am grateful that when my hands failed it was over the table and not over the actual floor. Because, y’know, sweeping.

I am grateful that I had finished prepping things because using knives for anything would be counterintuitive at this point.

I mean, don’t think me an angel. The moment this happened, I said aloud “Oh… no” and walked back to the bedroom for five minutes to lay down and reconsider through a profound dizziness what needed to happen for dinner to succeed, and how much I could physically do to both make that happen and to clean up that GD rice.

The world will not end if I don't wash these dishes today. LouLou is certain the world will end if I don't open the window and let him in so I can let him out the front door in five minutes.

The world will not end if I don’t wash these dishes today. LouLou is certain the world will end if I don’t open the window and let him in so I can let him out the front door in five minutes.

I had gone into the kitchen intending to get dinner started, wash some dishes and maybe throw a quick loaf of banana bread into the oven. Instead I found myself mourning a pound of brown Basmati rice, the number of dishes left dirty within the mess, and my good intentions. Therapy from long ago (PTSD is a bear, amirite?) has made friends with imagination and I know to envision an actual stop sign. Any stop sign. Maybe the one at the end of the block, maybe just a fine, towering sans serif of the word STOP… however it works.**

I went back down the hall and immediately snapped some photos to text my wife. I sat and did that. I took a few deep breaths and began moving slowly.

IMG_20141012_164513178I am grateful that dinner still ended up being just as tasty as I’d originally hoped.

I am grateful that I didn’t realize how much rice was in my coffee until I finished the cup.

I am grateful to have gotten 90% of the dishes washed.

And I am grateful that when Cat got home, she made me sit down while she swept the kitchen floor.

*This question pales in comparison to most others on my daily plate, so in truth I will probably never think about this much other than to find a new place to store our heavy-ass rice container.

**Don’t worry, it didn’t work for me right away either — just keep trying. Retrain your anxious neurons!

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.”

congaree10052014

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.

Snow Way!

hard-white-structuresI had an MRI in December to determine if I was, indeed, also entertaining a degenerative spinal disease (Spinal Stenosis) either due to or along with MS. A follow-up wasn’t scheduled until the end of January; I found this odd and a little annoying but also the name of the game when your doctor has literally thousands of MS patients.

The day for my appointment finally arrived, and in company with it was the season’s* first snow. My doctor’s office was, like most area businesses but unlike most area medical services, closed. Yesterday was the first day there were no delays anywhere, so I called to see when I could make up my missed appointment. In addition to the MRI results, I had been waiting patiently a couple of weeks while my Rx for and application to the Gilenya payment assistance program were filled out by my doctor and faxed by their office to the place that then sends me the oral medication meant to slow MS progression. The line to which I was transferred by the receptionist was answered by a lady who sounded bored by her day.

THR_2012_06_pp29_01_LG“Oh, if we have a clinic or something for the appointments this week I’ll make sure we call you, but right now he’s booked until the end of May.”

[PAUSE] “I understand, but I have been waiting since December for MRI results.”

“Hold please.”

…and then I was transferred to someone’s generic voicemail that still reported the office closed. It was the same voicemail I’d also get later when I called separately about my Rx. This second time it hung up on me before I could leave a telephone number.

Now it is the weekend and I am out of Gilenya for the fifth day. So now whatever is happening to my spine, as well as the already-diagnosed neurological condition are both going without treatment. Today I need, but cannot afford, a refill on the medicine that helps combat the crippling fatigue that leaves me incapable of most things outside a bed.

Last week, my SSDI attorney mistakenly told me my first government check had arrived (a second email came five minutes later, retracting her original statement).

I try to do a good job receiving the world around me as calmly as possible — zen is medically sound when stress aggravates symptoms. Yesterday brought another panic attack, however; those are another still largely untreated issue (Repeat to self: I’ll have Medicaid soon.).

Today it is understandable that in order to forgo recurring panic, I’ve got to force a GRATITUDE ADJUSTMENT:

  • 1546132_10151879958503038_1379670330_nI am grateful that I learned of my new appointment delay on the drive to the Congaree National Forest. Being there to see what snow remained was an excellent response to bad news. The actual boardwalk was, though visually appealing and the path to more swamp-in-snow, a little more dangerous than I would have liked. I am very proud to not have fallen on it.
  • I am grateful that soon I will have functional SSDI and health coverage.
  • I am grateful for my family’s strength through both my trials and those of their own.
  • I am grateful for Cowboy! In eleven years his cuteness and loveability have diminished not a whit.
  • I am grateful for the bills we have been able to pay, and
  • I am grateful to have groceries.
  • I am grateful for our Christmas Roku and year of internet service. Recent times have necessitated a little bit of escapism.
  • I am grateful for an unexpected number of page views yesterday.
  • I am grateful for the first night of 6 uninterrupted hours of sleep that I’ve had in literal years. I haven’t slept more than 4 without having to get up and walk to the bathroom.
  • I am grateful for a mostly clean kitchen and already-hung-up clean laundry.
  • I am grateful for this opportunity to vent and realign my perspective, thus already improving the outlook of my day. See, that wasn’t impossible. I have a weekend to plan my exact course of medical action from this point.
  • I am grateful today for your shoulder.

 

*[aside] Do we even really have seasons anymore? Who’s with me on remembering only four distinct ones, and not a dozen terrible variables?

I Woke Up.

555072_437964752955321_1123460888_nWhen I wake up now it’s not with an immediate sense of dread that something will be wrong again, such as extreme dizziness, cog fog or (heavens forbid) a complete inability to walk or see. For a respectable while after the Dx, I did, and I felt correct in assuming the worst because so often something unsavory was happening… I’m betting that doing this is a fairly normal response to being told your body is essentially eating itself slowly from the inside out.

After some years now I am familiar with the normal flux and wake up most days with the hope that today I will feel like a normal person and will be keenly able to do normal-person things. I open my eyes to to-do lists (yes, that’s a plural) ready to engage upon. This morning was another where walking was more painful than the day before; I will shrug away this hurt and do what I can about it (stretching, breathing, yoga, etc). I’ve got so many things to do both around the house and on the computer that feeling scared or depressed is a waste of what time I do have left with the faculties remaining to me.

743401-fig1Right now I am juggling the difficulties of unresolved vision decreases, spasticity‘s painful tightness and extensor spasms (just like the ones I would wake up with at 13/14 years old)… oh, and so far the bladder stuff remains unresolved by medication.

This all sucks. Big time.

But y’know what? If it seems easy to lose myself in a desperate pity party, how about losing myself in the opposite of that?

GRATITUDE ADJUSTMENT!

  • IMAG1218I woke this morning with good spirits and less cog fog than normal
  • I woke this morning to multiple clients
  • I woke this morning to four new tires on the car
  • I woke this morning beside the person I love most in this world,
  • and next to the dog I love most in this world.
  • I woke this morning to a refrigerator with lots of newly-bought produce
  • I woke this morning to The Daily Show over a healthy breakfast
  • I woke this morning.

 

Schtick in the Mud

947178_360521997383415_1299822664_nMy right eye is noticeably worse and since I’m not used to the diminished vision, it also makes spacial relations difficult. Walking into walls isn’t hard to turn into schtick around others — I’ve been doing that since the eighth grade’s Optic Neuritis. By then, too, I’d already also assigned myself to the church of Chris Farley; he was funny because he was fat, and to an impressionable pre-pube it seemed a viable solution to those awkward years of too much girlhood blossoming.

But see if there’s no one there to be audience for the schtick, I’m faced with aggravating limitations that have no sense of humor. There are options (there are, I swear) around the bored sensuality of hopelessness. Now when my motor skills or eyes are acting out I tend to go on un- okay, usually very- necessary housewife rampages. What I’d done by 12:30pm today:

  • swept in bedroom, emptied trash cans
  • cleaned sink full of recyclable cans/plastic
  • took cleaned recyclables to outside bin

    P1110492

    Thai Me Up! at ragstodishes.wordpress.com

  • put away clean/washed dirty dishes
  • made “Crap, Are We Out of Dog Food?” dog food*
  • swept dog food/trash can area
  • swept kitchen and hallway
  • washed/dried load of towels
  • cooked thai-ish dunch
  • showered

294719_598541790178728_749275526_nNow after a mid-afternoon rest I can keep adding to that list… Even though the early afternoon is being a tough little angry midget these days, I feel vindicated by the above bulleted list. That there is always something, however, that still needs doing is a time-trusted reality; right now that something is just a series of contented shrugs under the broad classification of “Saturday Night.”

“I’m bored’ is a useless thing to say. I mean, you live in a great, big, vast world that you’ve seen none percent of. Even the inside of your own mind is endless, it goes on forever, inwardly, do you understand? The fact that you’re alive is amazing, so you don’t get to say ‘I’m bored.” – Louis C.K.

So what wonders will tonight hold? Maybe an evening walk with the dogs, maybe cleaning out that spare bedroom, maybe futzing around in the kitchen, maybe futzing around with art, maybe watching a movie… I’d say the possibilities are endless, but they’re really quite finite. Unless we find out suddenly that the Mayans were right and things get really finite.

<iframe width=”560″ height=”315″ src=”http://www.youtube.com/embed/mEyrfFwf3rI&#8221; frameborder=”0″ allowfullscreen>

* “Crap, Are We Out of Dog Food?”* dog food is what gets pulled together to best emulate their usual nightly bites. Instead of ground turkey I substituted just cooking the rice in chicken broth, and that went with some cooked barley and a handful of frozen mixed vegetables.

That part of “This.”

"I consider painting as a means of expression, not as a goal." Marcel Duchamp

<i>”I consider painting as a means of expression, not as a goal.” Marcel Duchamp</i>

Life is busy. I don’t have to tell you that, but I wouldn’t mind if you told me how on earth there is time for both The Things That Need Doing and The Things Your Heart Wants Doing. The kitchen, for example, needs some cleaning. Dinner needs to be imagined and created. Laundry needs to be folded and put away. The floors need to be swept. I need a shower.

Today I woke up at 5:20am and had to go back to bed by 7am. I had to go back, as in I had no control over my eyes crossing, seeing double and closing intermittently like the hazards at a railroad crossing. By 10:30 I was awake again and am now in the kitchen where a noon seat was needed.

The Things That Need Doing are plentiful. They could fill the day easily and heartily. My identity as an artist is largely compromised by that of a housefrau, followed closely by that of an Uninsured Person With an Incurable Illness. Thing is, I feel like I could be an artist if my energy levels would commit to longer spells of, well, energy; as it stands I am only halfway through imagining the two meals that need to be made in advance of an angry hunger that sneaks up and smacks down with the gnashing of teeth.

My motor skills used to be way finer.

My motor skills used to be way finer.

Ideally I would like to try to start setting aside at least 1 hour a day for art. 1 selfish hour, all mine. Maybe this is a pipe dream — my disability doesn’t keep me indoors every day and sometimes more important things will demand priority. I got that. Too long have I spent afraid to draw or paint (damaged fine motor skills and occasional intention tremor) and too long have I used my computer for idling on the internet rather than in Photoshop. Where my identity as an artist is compromised by the blows of culture is where my identity as an artist might lie. The ideas I have that are based on real experience? Maybe I should go with some of them instead of simply entertaining them. “Even bad art is art,” says my personal idol Marcel Duchamp.

I can ponder this more over a cutting board. Dinner won’t cook itself. When it does, there will be vegetable lo mein for an early dinner and a spinach salad caprese for a later lite meal.

from "Pyroclast" series

from “Pyroclast” series

I got this. Well, that part of “this.” The prozac I started taking (again for the first time since college) is for the daily anxiety attacks that are making life even more awful than it needs to be. An SSRI might be the best educated response to chronic, worsening anxiety… but until it begins working for that reason I’ve got a couple more weeks on unexpected cliff overhangs. The best I can do is be mindful of where my body takes me that I need not be. When I feel the pressure in my throat begin, it needs to be a Red Flag that inspired questions like “Is feeling this way going to improve the situation that caused it?” and “Is this going to matter a year from now?”

It will not matter a year from now whether I make dinner today.

Unless I make a habit of inactivity and a year from now I am in a major depressive state that increased the progression of my disease and oh God I need…

to calm down and take a shower.

There is food made, the dishes are clean and I am alone in the house. A shower is imminent. My computer is in the kitchen with me. What, me worry?