Most People

I heard it again today:

“How you continue to keep going is impressive. Most people in your position would have given up already, but you just keep going.”

Uh. Yeah. In case you haven’t already noticed, I’m not like most people. I’m not trying to impress you. I certainly don’t care what most people would do.

My reply was simple:

“CRPS isn’t quitting on me, so I’m quitting on CRPS.”

Vignettes: Fifth Sympathetic Nerve Block, Finishing What was Started, and More Ballet

I went back up to New York again last week.

The first order of business was to complete the unmentionable thing that was left unfinished a couple weeks ago. Can’t talk about it…

Next, was another visit to my pain management doctor for my next lumbar sympathetic block. The blocks only last a few days and taper off within a few weeks, leaving my CRPS back at the starting point. Remission from the blocks is starting to look like a very remote possibility.

Before the procedure, I asked my doctor more about the radiofrequency ablasion (RFA) treatment we had discussed several months ago. She said I was a good candidate, but without health insurance, the procedure “would certainly be cost-preventative.” She recommended that I continue having the nerve block injections, as long as they provide relief.

And then the procedure. It went well. “Another one for the Hall Of Fame,” my doctor said.  She told me that there was “just something” about the anatomy of my back and spine that lend themselves to consistently “near perfect” lumbar sympathetic blocks… Uhm… Thank you???

And I also made appearances at two ballet classes! I was able to do most of the barre, and about half of centre. I tapped out after pirouettes. And let’s be honest. I didn’t actually pirouette… but still… Just being in class, being with my favorite teacher, hearing the music, feeling part of something, released a bit of my pent up stress, and renewed my spirits immeasurably.

Then, because my leg was feeling OK from the nerve block, I made my way downtown to see Jordan Matter’s Dancer’s Among Us exhibit. Ironically, I my visit was during the last weekend of the exhibit. And, I was lucky enough to meet one of the “tiny dancers among us” who was visiting the exhibit with her mother.

“And oh, if you knew what it meant to me…”

Ballet Series: What’s In My Shoe?

This is a ballet technique shoe.

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There really isn’t much to it. Canvas, some elastic, and two small pieces of leather for the sole.

Needless to say, there is no support in a ballet technique shoe. A dancer’s feet and ankles must be incredibly strong. The foot and ankle must always maintain stability. During some steps, a dancer’s ankle must absorb up to 14 times her body weight.

So, what’s a dancer to do when her foot, ankle, and lower leg stop functioning properly? Crying and pouting are certainly always valid options, but they don’t help rebuild someone who has become a partial person.

Dancing has been my identity since I was in preschool. In my tweens, the only disciplinary threat my parents ever gave to me was to “take away” dance. In a seemingly overly dramatic retort, I cried, “I would rather die than stop dancing.” I never stayed out late, I kept up my grades, I did chores, I maintained peace with my brother, I never missed a dance class. Not dancing was not an option. It still isn’t. Despite being crippled by CRPS, I have to maintain the hope that I will eventually find a way to accommodate my limitations. 

My right foot is now completely flat. The muscles that hold up my arch simply don’t work. I wore an arch support insert inside my sneaker when my doctor told me to try to wear a shoe on my right foot (predating the boot that has become a semi-permanent fixture to my life).

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It occurred to me one day a few months ago, during a brief moment of clarity, that if I could put the insert into a sneaker, maybe I could put the insert into a ballet slipper.

I have roughly 15 ballet technique shoes that all once belonged in matching sets of twos. Over time, they all ended up in a bin, hibernating under my bed. Some have elastic sewn properly and neatly in an X across the arch. Some have no elastic. Some have elastic sewn in a giant loop that I’d cross and bring under the bottom of the shoe. Some have two half sewn elastic pieces that I’d tie in a knot across my ankle. The elastic sewing situation depended solely on how lazy I was at a given point in time.

For my CRPS foot, I chose a shoe with the elastic in a giant loop.

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The insert fits perfectly inside. It cushions my heel and keeps my arch lifted.

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…and then there is the brace. A friend casually commented to me recently about my “cute black sock.” Well, that “sock” provides a great amount of stability to my ankle.

Take off your shoes and stand on one leg. Go on, do it.

Do you notice how there are lots of tiny adjustments in your foot and ankle as you maintain your balance?

Well, these tiny adjustments do not happen in my right foot. None of those little muscles function on their own. I do countless exercises with my therabands. I have been working on a balance board for over two and a half years. I swim. I ride my bike. I do everything that I am supposed to do. And still. Nothing.

If I want to attempt standing on my right leg, I have to have my body perfectly aligned, and then I just kind of hope I can keep myself upright. The one thing I can rely on: my leg and ankle will give out on me without warning.

So, I wear a brace in an attempt to maintain stability that my ankle does not provide for itself.

…and then I attempt to “dance.” This set up is not comfortable. Nothing about CRPS is comfortable. Then again, nothing about ballet is comfortable either.

I have no interest in comfort because I am (safely, slowly, steadfastly) fighting to keep a promise I made to myself a very long time ago: never give up this fundamentally crucial piece of who I am.

Vignettes: Neurologist Check-up

In a good news/bad news situation, I always prefer to hear the bad first. So, this post isn’t necessarily written in chronological order. It’s OK. It doesn’t have to be. 

I always try to piggy-back my appointments in New York so that I don’t have to make multiple trips for singular appointments. Luck is usually on my side, but sometimes it just isn’t possible. Over the next five weeks, I have a series of three trips that I have to make for single purposes.

Last Monday was the first trip. A check-up with my neurologist. This is the first check-up I’ve had in nine months where I hadn’t had a nerve block just prior to the appointment. And hey, guess what? I still have CRPS.

I arrived to the appointment about 45 minutes early. Which meant I had to sit and wait. Which my leg hates. So, like a obstinate child, my leg decided to have a full-blown temper tantrum. By the time of my appointment, my leg was in a state of uncontrollable dystonia, making it difficult for my neurologist to fully assess the condition of my condition. But my leg was cold, and a different color, maybe not as swollen, blah, blah, blah. He asked where my worst point of pain was. Under the medial malleolus? Yes. And the center of the top of my ankle. And about two inches above my lateral malleolus on my fibula. And at the top of my fibula. And sometimes behind my knee. “Uh, huh. Yes,” he said, “those are the major nerve junctions…”

My doctor then reviewed the timeline of all of our visits in order to determine my progress, if any. We agreed that the medication and the pain management treatments help reduce some of the CRPS symptoms.

We had a discussion about baclofen. He asked if it made me sleepy. I said yes, but it, combined with the diazapam, actually controls the spasms. He raised his eyebrow as he looked at my shaking leg. I said I didn’t take my dose of baclofen yet because I fall asleep within 10 minutes of taking it. “Ahhh. And so you wanted to be awake for the appointment?” We laughed.

Then he quoted Voltaire. (I know I’ve said it before, but I will say it again. I love my doctors so much. Because they do things like quote Voltaire.)

“The art of medicine consists of amusing the patient while nature cures the disease.”

Yeah. Basically, he said there’s not much that he can do for me at this point beyond refilling my prescriptions. He was frustrated that he isn’t treating me. His frustration is with CRPS and how the disease has a mind of its own. He said that I should keep seeing my pain management doctor and come back to see him for another check up in 3 months.

While trying to fumble my shaking leg into its boot, I asked, “so, is this my life now, for the rest of my life?”

He looked down, he sighed, he looked up, he looked into my eyes. He said, “for now… CRPS takes hold, but at some point, sometimes, usually after many years, it decides to ease up. You first came to me four months after your injury. We were able to treat it early, and that can be promising.”

So yeah…

In other, happier news, on Monday evening, I took another ballet class! This was my second class since my accident almost three years ago. The first was last March, just after I’d had my nerve block. Monday’s class, even though it was the same “absolute beginner” class I’d taken two months ago, was exceptionally more difficult. My leg was not cooperating, and I had trouble standing on the right foot. Releve’s, and most certainly jumps, were out of the question. But who cares. I danced again. Sort of.

Seeing my teacher, interacting with the other students, hearing the brilliant pianist play for us, all helped heal aching pieces of my psyche. My teacher lives close to where I was staying so we rode the train together and were able to catch up. She gave me the best hug I’ve had in a while. I told her when I would be back in town again and that I plan to come to class again.

I was staying relatively close to Rockefeller Center, and I really wanted to see Jeff Koons’s new installation, Seated Ballerina. I walked down Sixth Avenue, past Radio City Music Hall, and wouldn’t you know it? NYU was having their graduation. Apart from the ensuing chaos, it was a pretty spectacular scene. Coincidentally, Columbia’s medical school was also having its graduation on the same day.

The hope that filled the city air that day was almost tangible.

Grumpy

Like most dads, my father always knows exactly the right thing to say. Except, my dad always knows exactly the right thing to say to send me into a tailspin. For example:

“You seem to be a little bit grumpy today,” he said.

Grumpy? No shit, Sherlock, but the “little bit” is a little bit wrong. If I were to rank myself on the grumpometer, I’d say, right now, I’m in the Really Fucking Grumpy category. Let’s take a little look at my day and think about why I might not be a chipper little chipmunk, shall we?

I woke up and went to the pool for a swim. Today was the sixth day in a row that I swam. I don’t normally swim on Saturdays, but I have to travel on Monday for a neurologist check up on Tuesday. I didn’t want to be out of the water for four days, so I went.

There was a lot of testosterone in the pool this morning. And I’m not saying that smugly. In fact, normally, it would be a good thing, but I just wanted to take it easy today. The lap lanes were all filled with men (hence testosterone…), all very good swimmers. One guy, a kid really, obviously an actively competitive swimmer, did an hour of IM sprints. It was insane. The other men were all very fast. The water was extra splashy and full of energy. It swept me away. I felt myself going fast. I kept trying to slow myself down. I was definitely not trying to compete at all… I promise… But, I was consistently doing 45 second 50’s, or 1:30 100s, which is, like, an actual athlete goal pace for long swims. I wanted to swim less than 40 minutes, but I got confused on the math (mornings are hard). I got in the water at 9:20, and somehow I thought that if I swam until 10:15, I would swim for 35 minutes.

(Yes, I really am that stupid on these drugs. I have not always been this stupid. I was a fucking chemistry major at University, concentrating in biophysical chemistry, for crying out loud. I can diagram the metabolic pathways of all of these dumb medications I have to take, but I can’t tell time. It’s awesome.)

According to my watch, I swam at full intensity for 53 minutes. I burned 527 calories. That was far too long, and much too high of a calorie burn. I am still 10 pounds underweight, and on my sixth day of exercise, putting in a long swim sets me up for a flare. Furthermore, it is difficult for me to replenish those calories because the drugs make me nauseous and kill my appetite.

My leg spasms lasted a full hour after I finished the swim.

When I came home, I immediately started a load of laundry so I could pack clean clothing for my trip. I always used to say that I hated doing laundry, but I had no idea what the word “hate” truly meant until I had CRPS. Here is how I now do laundry: I load my clothes into a laundry bag. My leg won’t tolerate the extra weight if I tried to carry the laundry, and I am afraid of the bag bumping into my CRPS leg. So I step with my left leg, drag the bag with my left arm while I drag my right leg. All the way across the house. Loading the washer on one leg used to be exceptionally challenging, but now that I am aces on my left leg, it is only moderately difficult. For a fun challenge, you should try it sometime.

While the washer ran, I made myself an everything bagel with butter, egg, and cheese, I felt sick, and I showered (sitting down, because, you know, CRPS). I changed the laundry from the washer to the dryer, again, still, on one leg (if you want a great core and quad workout with some hammy’s and glutes thrown in, try moving your laundry from washer to dryer while only standing on one leg).

Then, the litter box. Scooping the box and replenishing the litter is like, no big deal, right? CRPS raises the difficulty level of every stupid simple thing to a level 10. Don’t believe me? Take the litter box challenge: you have a brand new 25 lb box of litter, and one foot/leg cannot touch the ground at any point in the process. You get bonus execution points if you don’t spill.

And I have a stack of forms to fill out before my final hearing for social security disability (can’t talk about it…). I’ve had the forms for an embarrassing amount of time. Old Me would have focused, finished the forms, and returned them with the next day’s mail. CRPS Me keeps getting distracted. CRPS Me gets confused easily. It took me several days to realize that I am the claimant. Yeah, duh. I’ve been doing a little at a time, and today, I told myself I would finish. No excuses.

But, this means I had to push my afternoon doses back so that I didn’t fall into a 2 hour coma. This has its own implications though. I am supposed to take pills at the exact time every day. My body relies on them now. If I am late, I get fidgety, sweaty, and oh, what’s that you say? Yeah, that’s right. I get grumpy. But, anyway. The papers are now complete. But, just not yet in the envelope.

And back to the laundry. Ugh. I loaded my laundry bag from the dryer, on one leg, and dragged it back across the house. With my right knee resting on my bed, I dumped the bag, folded, and separated the clothes to wear and clothes to pack for my trip to my doctor.

(I complain about my laundry situation now, but it could be worse. It has been worse. At the time when I had my accident, I didn’t have laundry in my building, much less in my dwelling. I took my laundry, on crutches, in the dead of summer, down four flights of stairs, four blocks to a laundromat, and back up four flights of stairs. So, if you think I’m “grumpy” now…)

And all afternoon, it has been thunderstorming. My leg is not friends with thunderstorms. The rain makes my dumb leg feel like it is imploding. The buzzing is louder and more electrifying. My foot feels like a giant sponge that soaked up an ocean of ice water. The skin is feeling crispy fried…

And all of this isn’t necessarily what is making me the grumpiest. The main reason why I am up in a frothy grumpy lather is because I have the cognitive ability to analyze my day. Let’s take out all of the verbose complaints and descriptors. Here’s what I did today:

  • exercised for less than an hour
  • ate lunch
  • changed the litter box
  • did one load of laundry
  • filled out one half of one page of a form that was sent to me 4 weeks ago
  • thought about packing for a two day trip
  • endured a thunderstorm

It’s 7:00 in the evening, and this is what I have to show for my day. How can I not judge my underwhelming level of productivity? How can I not be angry at my leg for making everything in my life exponentially more difficult? How can I not be angry at myself for somehow allowing my leg to slow me down and hinder me to this extent? How can I pretend to be unaffected by the number of days that have slipped, not to mention the number that will continue to slip, away from me, just as today did?

And then, in the midst of my wallowing self-pitying self-judgment, it is pointed out to me, by my dear old dad, that I am, in fact, grumpy.

Long Promised Road

So hard to answer future’s riddle
When ahead is seeming so far behind
So hard to laugh a child-like giggle
When the tears start to torture my mind
So hard to shed the life of before
To let my soul automatically soar

But I hit hard at the battle that’s confronting me, yeah
Knock down all the roadblocks a-stumbling me
Throw off all the shackles that are binding me down

Sew up the wounds of evolution
And the now starts to get in my way
So what if life’s a revelation
If the mind speaks of only today
So real, the pain of growing in soul
Of climbing up to reality’s goal

But I hit hard at the battle that’s confronting me, yeah
Knock down all the roadblocks a-stumbling me
Throw off all the shackles that are binding me down

Long promised road
Trail starts at dawn
Carries on to the season’s ending
Long promised road
Flows to the source, gentle force, never ending, never ending

So hard to lift the jewelled sceptre
When the weight turns a smile to a frown
So hard to drink of passion nectar
When the taste of life’s holding me down
So hard to plant the seed of reform
To set my sights on defeating the storm

But I hit hard at the battle that’s confronting me, yeah
Knock down all the roadblocks a-stumbling me
Throw off all the shackles that are binding me down

Misery Motivates Me

I said it before. And I said it again. And now, I will say it once again: misery is my main motivation.

And it really doesn’t get much more miserable than yesterday morning.

It was supposed to rain about twelve-thirty. My leg told me it could be sooner. I went to the pool at nine-thirty anyway because swimming is now part of my religion. (Sit tight, there will be more on religion later…)

I got in. The pool was cold. My leg hurt. I started swimming. Moving right along.

About fifteen minutes into my swim, I felt the rush of water that comes from an enthusiastic flip turner in an adjacent lane. I looked over and saw the familiar tattoos of a dude who was once my friend, tried to take me out on a date (many, many, many, many months ago now), but he realized I wasn’t kidding about being crippled, and tried to be my friend again before abandoning the effort to move on to another girl who, quite coincidentally, lives four blocks from my old apartment in The City and, compounding the irony, she just so happens to belong to my former luxury gym with a beautiful indoor evenly-heated pool. Whatever. The dude. We are both athletes (one more legitimate than the other), go to the same YMCA, and sometimes see each other at the pool. It’s cool. No hard feelings.

Except: I knew that there were two other empty lanes on the other side of the other lane beside me. The lane he chose was next to the water aerobics class. Nobody ever chooses to be in the lane next to the water aerobics class. I won’t explain the reasons why, but you can imagine… So what the fuck? Whatever. I kept swimming.

Except: he, for some unexplained reason, deliberately swam directly beside me, keeping pace with me (note: he is a much faster swimmer than I am). And what you have to understand is that this guy is not just a triathlete, but an ironman. He moves a lot of water when he swims.

There were a couple of laps when I almost felt like a dolphin playing in an ocean liner’s wake,

but, for the most part, I was more like a dinghy in a hurricane, especially if I didn’t perfectly time my duck dive under the flip turn wave.

My leg was hurting, I had swam for about forty minutes, I knew the rain was coming. I told myself just a few more laps. I felt water on my arms and head as I swam. Is this guy really splashing that much??? No. It was raining. I was done.

I got to the shallow end of the lane just as the deluge began. I pulled myself out of the pool, as the lifeguard was putting my belongings under an umbrella he had set up on one of the tables (note: the lifeguard is, as he should be, the hero of this story).

Rain was pouring, my leg was shaking violently. I huddled under the umbrella, wrapped in a towel, standing with my spasming right leg propped on a chair. The rain dripped off of the umbrella and onto my leg which was partially covered by my towel. The result: my towel got more soaked with every second I stood there trying to stay dry/warm and stop shaking.

As I was adjusting my towel in a fashion to reduce sopping up rain water, it happened. Lightning. Everyone, including the dude, had to get out of the water. He came over to the table to assess the situation, and check his phone. We had a brief, disjoined pseudo-conversation. “This misery motivates me,” I said.

He said something like, “There’s someplace you’d rather be?”

I said something like, “Yeah, not crippled and in my old apartment, working.”

The lifeguard came over and told us that he needed to clear the pool deck for 30 minutes. I, humiliated and shaking pathetically, whispered, “I can’t walk.”

“I will help you,” the lifeguard said. He took my backpack, shoes, and offered me his arm, which I did not take. I have to have some amount of dignity, after all. And then, my swimming buddy buzzed past me and said, “Well, I’m off to greener pastures.”

Awesome. Very helpful comment. Thanks for that.

The lifeguard set up two chairs for me in the holding area where I was to wait out the storm. I sat, facing the pool through a locked gate, my right leg extended in front of me shaking on the second chair.

Two other women waited with me because they wanted to continue their swim after the storm. Both women are regulars like me. One sat next to me and started a conversation. “How old are you?” she asked me. I told her. Her eyes bugged. She said, “I thought you were 24, maybe 26, 30 tops.” I had no response so I blinked at her instead. She continued, “you have no body fat. Your stomach is completely flat…”

At that point, I tuned her out because I wanted my leg to stop shaking and stop hurting. I wasn’t interested in entertaining her accolades about how young and fit I look. She is a very sweet, well-intentioned lady. She finally mentioned that her two children were born the year before and the year after me. I changed the topic conversation to be about her children.

Fifteen minutes into the thirty minute wait since the lightning strike, the second woman decided to approach me with her hands raised. “You look like you are really suffering. Do you mind if I pray for you?”

Oh for fuck’s sake…

You see, around here, people have some bizarre notion that if they “lay hands” and speak in tongues and say things like “Jesus, strike the devil from her leg…” then I will magically, miraculously be “cured” by Jesus’s Almighty Grace. Or something.

People have “laid hands” on me several times in the past three years. That’s not the way CRPS works. Apparently it isn’t the way Jesus works either because I should have been “cured” many times by now. But, guess what? My leg still shakes. I still have CRPS.

I wasn’t in the mood. I told her that she may not touch me. She put her hands down. I said that if she wanted to pray silently, I would appreciate it. I followed up with an informative “but…” letting her know that Jesus most definitely already knows about my leg.

The three of us then sat in awkward silence, avoiding eye contact, until the lifeguard came out of his office, gave the all clear, and re-opened the gate.

The sun was shining again. The lifeguard carried my backpack and shoes back out to the deck and set me up on one of the deck chairs.

The spasms continued for an additional 45 minutes. The pain had made me dizzy and nauseous. I took slow controlled breaths and sipped water for 30 minutes after the spasms stopped.

What’s so motivating about this craptastic tapestry of annoyance, humiliation, and frustration? You see, I can’t stand that this is my life. I still can’t believe that this is my life. This cannot be my life. It has to change. Things have to improve. I must work to change it. I must keep fighting.

Peaks and Valleys

I spent the weekend binge watching Australia’s version of The Biggest Loser (tangentially, Australia has a number of reality shows that are just as good as, if not better than, their American counterparts. My Australian favorites are: The Biggest Loser, Australia’s Next Top Model, MasterChef… Anyway…).

For years, The Biggest Loser has been one of my guilty pleasures. But more than a guilty pleasure, the show is very inspirational for me. It used to help reinforce the mindset to keep pushing harder, keep working through the pain, keep going until the point of ultimate physical exhaustion. I spent decades pushing harder, working through pain, and going until the point of ultimate physical exhaustion. The reward was always worth the extra effort. I always became stronger and more focused.

My binge-watching weekend made me think: everything in my life must now be put into context of CRPS, even my beloved Biggest Losers.

Now that I have CRPS, there is no such thing as pushing past the pain. As the pain becomes exponentially worse, my leg fails and does not respond. Pushing harder becomes an impossibility, and ultimate physical exhaustion never comes. Very carefully, I must monitor and cater to every sensation in my dumb CRPS leg. Otherwise, I will be in bed for a week or two, fighting a flare.

Moreover, it has taken me almost three years to realize: the good days are tricks. Good days do not mean that I am more physically capable. A good day is not a CRPS-free day. On a good day, the nostrils and eyes of the alligator are peaking just above the water. The alligator is still there, lurking, and if provoked, it will attack.

Of course, this is a lesson I’ve been learning the hard way.

I had a good day two weeks ago. I woke up and my foot moved with more ease, the constant buzzing was quieter, my leg wasn’t as cold, the skin fire was smoldering, the gunshot wound felt like it was healing. I walked a little less like Charlie Chaplin. It was wonderful. I swam longer than usual. I did my full set of PT exercises. I tried some basic ballet barre exercises with my right foot. It was glorious. I wanted to push harder, but the pain and all of the accompanying CRPS symptoms crept back. Before the end of the day, I could feel the flare coming.

I am still not back to where I was the day before my good day. A good day is a mind fuck; in some way, good days are the worst part of having CRPS. There is no logical explanation for the extent of this recent flare. I didn’t put forth any kind of effort that should have pushed my leg into this level of rebellion. I didn’t run a marathon, I didn’t ride 100 miles on my bike, I didn’t perform (or rehearse) swan lake, I didn’t do 32 fouettes en pointe.

For half of a day, I lost my troll-like gait, I swam 15 minutes longer, I did 20 reps of 5 exercises with a red theraband, and I did about 16 tendus with my right leg. There was no reward for my (minimal) extra effort. I am weaker and more aimless.

I guess I’m starting to get it. I need to actively seek some kind of CRPS homeostasis, where I don’t try to push myself to achieve any kind of tangible physical milestone.

My perception of success must shift.

Maybe success is to be measured in flare-free days instead of HIIT workouts, muscle density, or hours spent on the bike or in the pool. I must give up the exquisite endorphin rush that follows a near-vomit workout. I must not try to take advantage of a good day to try to be more productive. I just need to keep to my routine and enjoy the diminished symptoms for a day.

Ugh.

This mentality is boring. Very boring. Borderline lazy. It is counter to every ounce of an indefatigable work ethic that has been a fundamental part of my psyche since I was four years old. But these flares are all consuming and they are stronger than my self-judgment.

So now, I must chop off all of the peaks in order to fill in the valleys.