Vignettes: Neurologist Check up and Sixth Sympathetic Nerve Block and Ballet

It’s funny (not really), how all of this has become normal for me. Traveling a thousand miles to see my doctors. Having a large needle threaded through my spine.  No big deal… Except, it is a big deal. Except, I can’t complain because it is what I have to keep doing at this time.

My neurologist check up went… well… like they usually do… I was in extreme pain from my trip. My leg was having a full-blown dystonic meltdown like a tired, hungry, spoiled, obstinate 3 year-old child amid temper tantrum hysteria. The neurologist didn’t like that very much.

He wrote a new prescription, increasing my dosage of Lyrica. He noticed significant visible atrophy in my right lower leg. He measured around both of my calves. My left was just over 13″. I couldn’t bear to look at the measurement of the right. He told me to keep swimming. He said wanted to see me again in another three months. Awesome.

And the nerve block. All of my favorite and familiar fellows from Columbia’s Pain Medicine program moved on over the summer. I was at the mercy of a new crop of fellows. The sympathetic block procedure went very well. Under the tutelage of my beloved doctor, the unfamiliar new guy performed beautifully. Another one for the hall of fame.

But getting to this point was a bit of a struggle. The appointments happen in three phases. The third is the procedure itself. The first: Check-In and vitals taking. Everything normal. Fine. The second: IV connected to a bag of saline solution (you know, just in case…). This is where there was a bit of… uh… a hiccup. A big bloody hiccup.

By this point, I have zero fear of needles. I don’t really care about seeing my blood. I don’t like it, but I’m not squeamish that way. Or at least I didn’t think I was. I was ready. The new guy asked me to show him my hands so he could see my veins. I raised my eyebrow because, like, the veins in my arms bulge and don’t need close inspection. I told the doctor, (‘he’s new,’ I told myself, ‘I’ll go easy on him’) about my deal with his predecessors about using my elbow vein.

I don’t think he was expecting a special request. I inadvertently threw him off his game.  He struggled getting the bag openedish and left the room with the bag, tubes, and pole. Uhhm? Hello? Goodbye? A couple minutes later, he returned. I saw through his thin veneer of feigned confidence. I sat still, still confident that everything would be fine.

He placed a paper towel underneath my elbow. Whatthefuck? I decided to force my attention away from the obvious intrusive premonition.

‘Whatever,’ I quietly consoled myself, ‘maybe it’s just his thing.’

Nope. Not just his thing. This guy had no clue how to start an IV. The “little pinch” somehow resulted in a massive leak from my vein. The flimsy paper towel was useless. Blood poured out of my elbow. I stayed still and quiet and breathed as calmly as possible. If I freaked out like I wanted to, I knew he’d become even more rattled. He gained control. I felt lightheaded. After he cleaned most of my arm (wiping, wiping, wiping), he couldn’t figure out how to open the IV to allow the saline to enter my bloodstream. Instead, what was left of my blood traveled up the tube.

An angel, in the form of the technician, entered the room to help me into the procedure room. She looked at my curiously bloody elbow. She called my doctor over. “There seems to be a lot of blood backing up in the tube.”

I couldn’t hold myself back any longer. “I think that if someone would just open the IV, the flow of the saline would push the blood back into my body.”

“The IV isn’t opened?! Oh! Of course. There. Is that better? That’s better.”

I prayed to baby Jesus, Buddha, and Benny Goodman, “Please, please, God, don’t let that guy be the guy threading a needle through my spine. Pretty please?”

He wasn’t. He left the room. Halle-fucking-lujah.

The doctor who performed the procedure was incredible. And that is really all that matters. It’s funny (not really) how I don’t care if I almost bled to death, so long as my leg is warm, stops hurting, and shaking for a few days.

The bright spot in my trip was, of course, a ballet class. The teacher I’ve been taking from, Kat, was out of town. I looked at the various schedules of the various studios. Another one of my favorite teachers, and friend, Jamie Salmon, was teaching a beginning ballet class at Broadway Dance Center. (Her class was the last class I had taken before my accident. Peridance. June 13, 2014. It was a Friday.)

I went to the barre. I stretched. Into the room slumped my all-time favorite accompanist. Vladimir. He has been playing for classes, around The City, as long as I can remember taking classes in The City. At least 20 years. I smiled and cried a little bit. I get so nostalgic.

The class was crowded. Jamie didn’t see me. Halfway through barre she approached me. “Pull up even more with your standing side,” she rubbed the back of her fingers along my oblique abs. I was standing on my left foot. I was able to make the correction. “Good girl.” She smiled and moved on.

But centre was, as it is now, a struggle for me. I am getting better at merging what I can do with what I can’t. But everyone was messing up the timing of one combination. I wasn’t the only one struggling. She stopped the class and said, “It’s not that it was not musical… but it certainly wasn’t what I’d call musical.” Most of the class snickered quietly. I guffawed.

In a half-whisper half-exclamation, if that’s possible, “Jenn!” She was beaming. “I’m sorry, I just can’t wait until the end of class to hug you.” She came to me and embraced me with the warmest, most loving hug I’ve received since Kat. Then class continued with my usual flubbery.

After class, in the hallway, Jamie and I talked, catching up, for about a half hour. She bragged about me to other bystanders. “Jenn, religiously came to my 9 am pointe classes. She helped me get it up and running. Not many people thought a 9 am hour and a half pointe class was possible.” She laughed. It was, hands down, the best pointe class in the city. I held back a tear knowing that I will probably never dance on pointe again.

The next class had begun. I looked in. Holy shit. Sascha Radetsky was teaching. At Broadway Dance Center. We made eye contact through the window. He cocked his head and smirked at me with the curiosity of a vague memory of someone from many many years ago. He kept demonstrating without missing a beat.

As you can probably imagine, going the class added much needed grounding comfort to another exasperating trip. I spent a total of just over two hours in the building, yet that precious time is the reason why I keep trying to fight this CRPS battle. Dancers are my people. Ballet is my home.

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Waking Up in the Afternoon

By now you know that I have to take a bunch of pills throughout the day, all of which make me fall asleep.

Waking up in the afternoon is often more difficult than waking up in the morningtime. For example: today. Right now.

Coming out of my midday fog, I find myself in a cool, dark room on a hot, sunny day. I am emerging into a dreamlike reality, watching an obscure Youtube video that all too perfectly mimics my current mental state.

(I am not completely unconvinced that Lhasa de Sela isn’t one of my spirit guides.)

Here Lhasa is, lulling me out of my lull, singing my love-life story, so honestly and so sweetly, in my preferred 6/8 time signature.

Maybe I am still more dreaming than awake.

A low camera, never quite focusing on my beloved storyteller, pans the on-looking crowd dressed in scowls, judgmental half-smiles, and dark clothing. Nearing the end of the cameraman’s circle of judges is a photographer. Not looking too unlike myself before all the sun, she smiles more truthfully than the others and is the only one in the crowd who bothers to try to sing along. She manually advances her film. She appears to be shooting with what I swear is a Canon AE-1 , which just so happens to be my first and all-time favorite SLR, trumping even the modern day ultra-uber-DSLR’s.

This video is all too similar to something my brain might conjure.

It is hard for me to know where a dream ends and real life begins again, especially in the afternoons. Familiar music via Youtube usually helps bridge the gap.

 

Broken

My boot is an instant conversation opener. Always. Wherever I go.

I don’t go very many places, or very often, but responding to strangers has become very, very tiresome.

To break the monotony and repetition of how a freak misstep into a hole in the ground ruined my life as I knew it, I began to make up fantastic quick explanations about “what happened.” Sky diving, Space Mountain, tree climbing in the Serengeti, etc.

Sometimes, I don’t stop to clarify. I just keep on my wobbling way, leaving my interrogators to scratch their heads, trying to make heads or tails of what I said. Four or five wobbles away, I usually hear chuckles and I smile.

My responses are helped along by the medication, which has destroyed my internal filter. I don’t always know what I am thinking until I say it.

For example, a woman recently held a door for me. “Broken?” she asked.

Without hesitation, I responded, “Leg, no. Spirit, yes.”

I wobbled on, not stopping for further conversation. I didn’t hear a chuckle. I didn’t smile.

My Brain on Drugs

Some folks like to joke about the fact that I “get to” take “drugs.”

Let’s be clear: I am forced, against my will, to take medication. I don’t like feeling cloudy. I don’t like the constant confusion. I don’t like not being able to think clearly. I don’t like feeling as if my brain was replaced by straw.

Here is an example.

(Yesterday, told in the present tense.)

I brush my teeth. I shower. I want to put on deodorant. I brush my teeth instead. I leave the bathroom and make it two steps, stop and remember. That’s right: deodorant. I go back into the bathroom and see my toothbrush. I brush my teeth. I leave the bathroom and make it two steps, stop and remember. This time, I’m not going to allow that dang toothbrush to trick me, standing tall on it’s charger, with its pretty green light. I walk back into the bathroom (determined, with as much focus as I can muster), repeating to myself “deodorant. deodorant. deodorant. deodorant…” until my hand has a firm grip on the container.

An hour later, I think to myself, “have I brushed my teeth today?”

Gains and Losses

Weight, that is. Let’s talk about it.

I remember when I went from a size 30 Speedo to a size 32.

It was the summer I turned 20. I was taking a break from serious ballet. I wanted to stay in shape by riding my bike and swimming. Like most ballet dancers, I had deeply rooted hang ups about my body size. I am 5’7″. At age 20, I weighed in somewhere between 112 – 115 lbs.

I was bathing suit shopping in a Sports Authority in Oceanside, CA. I tried to try on several different patterns of my trusty size 30. None of them fit. They were all the same size, why would they? I cried real tears in the Sports Authority dressing room for an embarrassing amount of time.

I pulled myself together, went back to the rack of suits and brought several size 32’s into my dressing room. They all fit. I chose a blue and green geometric pattern and went on my way. That event is etched in my memory as a key moment when I realized that I was growing up.

For almost two decades, I believed that weight is maintained by calories in = calories burned. I kept my weight fairly steady ranging between 115-120, and kept a consistent rotation of size 32 Speedo swimsuits.

And then, as we all know by now, on that fateful evening in June, 2014, I fell down.

The Gain

For the first several months of my injury, I stayed pretty fit. Being on crutches in New York City is one hell of a fitness plan. My arms never looked so good. My left leg was toned and trim.

My orthopedist uncrutched me about a month before I went to the neurologist for the first time. My right leg killed to walk on it, so I didn’t leave my apartment as often. Still, I watched what I ate and didn’t really gain weight. In perfect honesty, though, I wasn’t worried about a pouchy belly or saddle bags. I was mostly concerned about the fact that a full three months after my accident, my right ankle continued to be swollen, discolored, and horrifically painful.

The orthopedist referred me to a neurologist. The neurologist confirmed the orthopedist’s suspicions of RSD/CRPS. He prescribed meloxicam and  gabapentin. While I titrated up to the doctor’s recommended dose, I was very sick to my stomach. And then I became the zombie that you’ve come to know and love. And then, I gained weight. Fast.

Within one month, I gained five pounds. I was suddenly craving Cool Ranch Doritos and Chips Ahoy cookies. I had very little impulse control. Right. I wasn’t working out and I was eating junk. It made perfect sense. Weight gain explained. I started swimming at my gym daily. I could still fit into the size 32. Everything was under control. Or so I thought.

By the spring of 2015, it became clear that I could not handle the harsh side effects of gabapentin, so my neurologist switched my prescription to lyrica. I was careful about what I ate. I counted calories. I rode my bike on its trainer every day.

By the summer of 2015, I had gained almost twenty pounds. I weighed 138. One hundred thirty-eight. Pounds. Needless to say, I needed a differently sized bathing suit, a size 34.

I swam. I rode my bike. I ate healthfully. How could I keep gaining weight?

This was absolutely unacceptable. None of my clothes fit. I didn’t recognize myself. I had to do something. I thought about the drugs I was taking. I thought about what these medications were doing on a physiological  level. Neural inhibitors inhibit neurons. Duh.

(It really did take me almost a year to figure this out. I told you, I’m a zombie because, you know, like, neural inhibitors.)

Apparently these meds don’t discriminate. They slow down all nerves, not just the pesky CRPS misfiring nerves. They slow everything down. Way down. Including my metabolism and motivation.

All those years of disciplined athletic training apparently were preparing me to reach this point in my life. I needed to use everything I knew about speeding up a metabolism: a moderate caloric intake, aerobic activity, and increased muscle density.

Weight bearing exercise was (is) still out of the question. Impact was (is) impossible. Low aerobic activity would have to suffice. I gradually increased the amount of time that I swam (never mind- for now- those months when I gave up swimming…). I rode my bike every day until the point when my leg gave out. I worked with weights (seated) for my arms. I worked the major muscle groups in my left leg: one legged squats, leg extensions with weights. My right leg proved to be a bit of a challenge. I did slower extensions without weights and kept up my theraband exercises. I am now the queen of one-legged five minute planks.

It took almost a year, working every day (every. single. day), but my weight stabilized around 125. It was not my pre-fall weight, but my belly was no longer an awning for my pants. I was back in my trusty size 32 Speedo swimsuit. I was content with my progress.

The Loss

Last July, I visited my pain management doctor for the first time. The spasms in my leg were still out of control. She prescribed baclofen in addition to the diazapam prescribed by my neurologist.

Baclofen is a muscle relaxant meant for long term spasmodic conditions. Baclofen works. Baclofen puts me into a coma for several hours. I knew my future would include another struggle with my weight.

And it did. But not in the way I thought.

Since I anticipated gaining weight, I was very mindful about my diet and workout routine. My doctor had me titrate up to the full dose very slowly, over several weeks. By the time I was up to the full dose, I had lost four pounds. I was happy. Very happy. I thought my metabolism had somehow finally mysteriously kicked in. One hundred twenty pounds came and went. Sweet. I was at my pre-fall weight. I finally felt good about the way I looked (apart from my grossly atrophied non-functional right leg).

Last November, my old size 32 Speedo began to drag in the water. I thought it was just old and stretched out. I found a new size 32 on sale online. It arrived, I tried it on. It was too big. It was a different fabric; that had to be the reason. I returned it and ordered another in the same fabric as my old suit. I tried it on. It seemed ok. Five hundred yards into the the first swim, I took on water. The suit was dragging. How could this be?

I weighed myself when got home that day. 112.4 pounds. I knew I needed a size 30 Speedo. I found the ugliest, least expensive size 30 on all of the internet. It arrived and it fit. I cried real tears in my childhood bedroom.

When I went for my nerve block and my check up last month, I weighed in at 108.1 pounds. I stood, staring in disbelief at the scale in my neurologist’s office. I told him that I had been losing weight rapidly since the summer. He told me not to back off of baclofen. He told me not to stop swimming or riding my bike. He told me to increase my calories, to eat more dairy (yogurt, cheese, whole milk…), breads, and sugars. Pretty much, if it leads to heart disease and diabetes, it’s on my new diet. This is the stuff of some people’s dreams, but it just makes me feel like by body is completely out of my control.

I have stopped losing, but I have yet to gain any weight.

The Point

So what’s the point of all those words, telling you my real height, my real weights, my real sizes, my real medications, and the real struggles I’ve had with my weight over the past two years?

My point is that until CRPS, I was a bit of a jerk when it came to assumptions about weight gain and loss. I didn’t understand why or how some people have difficulty. I didn’t understand how truly difficult that difficulty can be.

The theories that calories in > expenditure = weight gain and calories in < expenditure = weight loss are overly simplistic. Normal functioning, balanced systems work this way. However, if the biochemistry is altered, thrown out of whack, the equation is far more complex and less predictable.

Again, the overarching lesson I’m learning through this CRPS ordeal is that the best anyone can do is try, especially when a disease steals all control. The best I can do is try to stay healthy: to eat right, exercise, and care for this body that continues to rebel against me.