On How I Look

I have been writing and re-writing this post for almost two months. You see, I am having a great amount of difficulty articulating the discrepancies between the way I look, the way I want to look, the way I feel, and the way I want to feel. My sense of self is in a constant state of flux and confusion. I have almost completely separated my emotional self from my physical self, and neither are accurately portrayed by my appearance.

If, five years ago, you had shown me a photograph of the way I look now, I’d have thought I look pretty darn good. I am thin, I am tan, I am relatively muscular, my hair is sun-bleached and blonde-streaked. With my boot, I could easily pass for an injured outdoor athlete.

My day to day life involves oscillating between a state of unconsciousness and activities designed to try to make my leg function properly again. Those activities are solely responsible for the way I look.

For the most part, I look the way I do because of swimming. The pool at my YMCA is outdoors. I swim without a cap. Swim caps drive me nuts; the result is chlorine bleached hair. I try to be in the pool about 9:30 am. I swim between 30 and 60 minutes. I burn a lot of calories and have built up some muscle mass. After the swim, I have to sit poolside for about an hour while my leg settles down. I wear SPF 50 sunblock, but spending 2 hours in the sun 5 or six days a week for many, many months has given me a “healthy glow.”

My feelings regarding my appearance vacillate between resentment toward strangers because their perceptions of me are that I am healthy, capable and fit, resentment toward myself because of the unbridgeable discrepancy between how I look and how I feel, and a complete dismissal of my physical appearance because CRPS becomes all-consuming.

Admittedly, the way I look provides a convenient smokescreen. It might actually be the image I try to project to strangers. It secretly might be the image that I try to project to friends, family, and sometimes to myself. It helps me cling to the idea of who I used to be and who I want to be. The reality of how I feel, and how my leg looks upon closer inspection, is too much to bear. I have not fully accepted CRPS into my life, even though it is my life now. I am not yet able to fully identify as a person with a debilitating lifelong condition.

But, my appearance is a lie.

The perception of health is an unfair judgment. I cannot live up to the expectations from others, and from myself, about what the capabilities should be of somebody who has my physique.

Resentment comes when people tell me that I look “better.” Resentment comes when I look in the mirror and see a body closely resembling my old life’s ideal. Outwardly, it reflects the way I used to feel before my accident: sunny, active, athletic, strong, healthy, and full of energy.

However, the true reflection is of all the exceptionally painful work that I have done over the past 2 years and 10 months trying to make my leg function and stop hurting. The reflection I see in the mirror is one of failure, my failure to overcome CRPS and stop it from taking everything I had, and was, away from me.

So, the next time you see me, please try to see me as I am. Try to look past the tan skin and thin, muscular arms; try see my struggle. Try to see the veneer of frustrated sorrow just below a cordial smile. Try to see my crumbling psyche, delicately buttressed by sarcasm, bad jokes, and unfounded hope. And, if you are feeling particularly kind, please try to help save me from my spiraling internal conflict by not commenting on how I look.

Nothing’s As It Seems by Gordi

There are whispers in the air
That tell the stories of our wildest dreams
But leave us empty in despair
But on our own, so everything is as it seems now
When the dark comes so harsh to life
And you can’t shake the shadow above
That’s following you out into the night
Paint your face on with a smile, say to them don’t worry
Carry on just for a while, you’ll get lost and hurry
Can you see it now?
That nothing’s as it seems somehow

And everything you’ve ever lost
Must have a reason it is never found
Convince yourself you’re better off
And you’ll be fine
Or at least that’s how it sounds like
When the dark comes so harsh to life
And you can’t shake the shadow above
That’s following you out into the night
Paint your face on with a smile, say to them don’t worry
Carry on just for a while, you get lost and hurry
Can you see it now?
That nothing’s as it seems somehow

When you don’t know how much is enough
When we’ll get in the way
And you can only bear your soul
When you think that this is your day
But when it’s not and you get shot
You wish for someone else’s luck
But you can’t do nothing
So you must be doing something
Don’t you know what it’s like
To disappear from someone else’s life so you can

Paint your face on with a smile, say to them don’t worry
Carry on just for a while, you’ll get lost and hurry
Can you see it now?
That nothing’s as it seems somehow

(https://genius.com/Gordi-nothings-as-it-seems-lyrics)

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I’ve Got Dreams to Remember

I guess at first glance, my night’s sleep looks OK. There was a lot of deep sleep, which is supposedly a good thing.

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But, the deep sleep is disproportionate and I always have crazy dreams. Throughout my life, I’ve tended to remember my dreams, and they have intensified since I started taking all of this medication. Now I have many dreams each night, in full color, with sounds, words, and emotions. It’s exhausting.

Here is what happened during last night’s adventures.

My first dream of the night… There are lots of bizarre, obscure details, but I’m just going to describe it and hopefully you can follow along.

I was a contestant on America’s Next Top Model (yeah, I know, but just go with it…) and there was a runway challenge that would determine the next elimination. For the challenge, we (the contestants) had to create “fashion” out of the outfits we came in. I looked down. I was wearing a truly stupid get up. It was an ugly 1990’s style black dress with an empire waist and a square neckline. Over the dress, I had on a bolero jacket with four buttons down the front.

Part of the challenge assignment was to jazz up our outfits with things we had in our bags. I looked to see what I had with me. I opened a little zipper pouch and some decorative bobby pins fell out.

“Sweet,” I thought, “I can put these on my jacket buttons to really make this outfit into high-fashion.” And as I was looking more closely at my decorative bobby pins, I noticed that, instead of a pretty little bobble, some of them had photographs of Tyra Banks, “Mr.” Jay Manuel, and André Leon Talley.

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So perfect. These photo bobby pins on my buttons on my bolero jacket are really going to make the judges sit up and notice. But shit! I have four buttons and only three people… I thought that I might have another bobby pin with Tyra on it. That would be acceptable. But gah, where is it? I could only find regular bobby pins.

And then, in the midst of my bobby pin and button debacle, I got distracted by a pile of take-out food bags at my feet. I had ordered a bunch of food. Really, really messy food with lots of sauces that leaked. I suddenly had a shrimp po’ boy in my right hand and a bag with a container of salad in my left hand. My sandwich was dripping into the lap of my 90’s fabulous dress. Shit. I tried to juggle the sandwich into a different position, and by doing so, I flung my left hand with the salad. The little plastic container with the salad dressing fell out of the bag and exploded on the pant leg of the contestant sitting next to me. “Oops. Gee, I’m really sorry.”

The food disappeared and I refocused on the challenge. The final element was to choose a song to play while I did my runway walk. I chose Love Lockdown by Kanye West.

And then it was time to line up for the runway show, which seemed to be held on the same stage as the Waterville talent contest from Jim Henson’s Emmet Otter’s Jug-Band Christmas.

I woke up before I did my runway walk, so I have no idea if the judges were wowed by my bobby pin buttons…

In my next dream, it finally happened. I got the call to be a Radio City Rockette!

As you can probably imagine, I was overjoyed. I made my way to the theatre for rehearsal, so nervous. My hands were sweaty and I had trouble opening the door that led into the stairwell that would lead me to the rehearsal room. I was walking up the stairs feeling happy and nervous and I was imagining myself onstage feeling the warmth of the lights. And then all of a sudden, I stopped. I said loudly out loud, “Shit! I have CRPS!” I sat down, halfway up the stairs, and cried. I was devastated because there was zero possibility that my right foot would fit, much less be stable enough to dance, in my LaDucas.

I woke up as the sound of my sobs were echoing in the stairwell.

In my final dream of the night, I was supposedly riding a subway, but it was more like Berlin’s S-Bahn.

The train was above ground (like the S-Bahn) traveling up what I think would have been 3rd Avenue. I needed to get off at 34th St. I was, for some reason, very confused about the trip, and it was a short distance, but took a very long time. I was sitting next to a girl, maybe 25ish, who looked very sweet and friendly. I made eye contact. I said something about how slow the train was and asked her if she knew why it was taking so long. She smiled and said she didn’t know. I realized that I wasn’t wearing any shoes. I thought, “not again.” (What does this even mean? I don’t remember forgetting my shoes in previous dreams…) I was sitting by the door. I heard the door open and close. A creepy guy got on and was standing in front of the doors. I avoided eye contact with him and tried to make conversation with the girl. I didn’t stand up, but somehow my eyesight aligned with his face. “I don’t know why you are trying to get advice from a crack addict,” he said to me.

“Uhm. A crack addict???” I said.

“Yeah. Her,” He said. Pointing with his head in the direction of the girl because his hands were in the pockets of a long dark blue trench coat.

“How do you know she is a crack addict??” I asked.

The guy leaned in very close to my face. His eyes were bloodshot and he scowled at me.

“Because I just smoked crack with her!”

And then I woke up and lied in bed trying to figure out what in the world I had just dreamt. Crack?!?! I dozed off a little before I gave up on trying to sleep.

So, if you ever wonder why I say, “mornings are hard,” this is part of the reason.  My pain is worse in the mornings, my head is groggy from the medications, and in just over 5 hours, I may have been on a national reality tv show, improvising a horrendous makeshift outfit before embarrassing myself, felt the elation of one of my childhood dreams coming true, only to be completely deflated by CRPS (gah, it’s my real life, I don’t need it hijacking my imagination too…), and ridden shoeless on the S-Bahn slowly making my way up 3rd Ave with a couple of crack addicts.

Your patience with me as I reemerge into the wakeful world, is truly appreciated.

On Motivation

People complain to me that they lack motivation and sometimes ask me for advice on staying motivated.

It’s very simple: just remember what you want, why you want it, have hope for the future, and have enough and faith in yourself to patiently take one day at a time.

That sounds great, but let’s put it in the context of my reality. I hate every aspect of my life; this hatred is strong enough to drive me to keep trying to change. Day after cruel day. Unrelenting physical pain is at war with emotional pain. Lopsided physical strength teams up with dwindling emotional strength in a desperate attempt to instigate change.

Here, in no particular order, are some of the things that continually motivate me to fight to improve my life.

  • I don’t want to get out of bed in the morning. I’m groggy. I hurt. I can’t move. I long for the times when sleep was simply a physical necessity, the times when I couldn’t wait to start my day and leave the house because I had things to do.
  • Florida. Central Florida. With its giant bugs, giant frogs, and giant birds. Year-round allergies. Unrelenting humidity. Every benadryl, every very bad hair day with nowhere to go, every cuban tree frog that jumps out of the ether, every sandhill crane that stands in the road in a showdown with cars traveling 50 mph, every enormous hairy poisonous caterpillar. They all remind me how badly I want to leave this God-forsaken wasteland.
  • Roller coasters. I love roller coasters. A friend of mine casually told me about taking his family to Universal. It sounded fun. I imagined going there. My heart sank as I realized I might possibly never go to an amusement park again.  Let’s pretend for a second that I could walk around and stand in lines all day. The rides themselves would cause my leg to flare. The vibrations, having my leg bent at the knee, being jostled around… It’s just not possible. For now…
  • The misery of finishing an hour long “winter” swim, crawling out of the pool, and having to sit in 55 degree, raining weather, waiting for my leg to stop shaking so that I can walk and leave the facility.
  • Living with my parents while they demo and reno their master bathroom. I’m not going to expand on this one. You can use your imagination. I love my parents very much and there are no words to appropriately express my gratitude for all they’ve done and continue to do for me. However, prior to this nightmare, I lived alone for many, many years, and over two decades away from my parents’ home. It would be nice to visit them again, even if it was very often from a different house in the same neighborhood.
  • The humiliation of people’s sympathy. I’m tired of being that tragic girl with the sad story. I’m tired of people telling me in unassured or saccharine tones how strong I am and how things will get better. I’m tired of the furrowed brows when people ask how I am. I’m tired of people knowing how I am before they ask. I have CRPS… I want to have a happy, secure, normalish, non-sympathy evoking life despite CRPS.
  • Dancing. Of course, dancing. I hate that I can’t dance six days a week anymore. I have fought my body for almost three years and I took one class. It took a week to recover, and it was the most basic level, but I did it. Sort of. I want more. I want to improve. I want my leg to work properly so that I can dance regularly again.
  • Work. I miss being self-sufficient. I miss having the sense of self worth that comes with being able to answer the question “what do you *do*?” because that question really means “who are you?” I want to be more than CRPS, I want to do more than treat and try to overcome it, even though it has completely consumed my life.
  • Loneliness. I have friends, and I am slowly making new friends through swimming at the YMCA. But, my face-to-face interactions are short and most of my time is spent at home, alone. I text or email my far away friends, and speak to a small number on the phone. This is a reminder of how distant my old life is. I would love to meet up for cocktails or coffee, go to a movie, wander around town laughing, losing track of time with a close friend.

I kind of feel like I should have a more upbeat, positive message for motivation, but this is the truth. My life as it is now is wholly unacceptable, and that is what motivates me at 7:35 every morning when my alarm goes off after another night of sleeping poorly. It is what motivates me to get out of bed, and face another lonely day of therapy for my leg. It is what motivates me to swim six days a week. I remember that the pool at the Columbus Circle Equinox never had frogs. I remember screaming with joy on roller coasters. I remember the happy exhaustion after dancing ballet for four and a half hours. I remember never having to question whether my leg was going to hold me up. I remember never saying “I can’t.” I remember these things and I want them again and I will do everything in my power to try to regain them. So, as much as I don’t want to get up and try again another day, I want to have my life back infinitely more.

So there you have it. Motivation.

What Is Pain Management Anyway?

Unless you are, or someone you know well is, burdened with the misfortune of needing a pain management doctor, you probably don’t know what this kind of doctor does. It’s OK. I didn’t know either.

At first, I resisted the idea of pain management because, like, it just means a prescription for opioids, right? Wrong.

First of all, we should differentiate between the pain clinics one hears about in the news and the true profession of pain management. I don’t know anything about the clinics, referred to as “pill mills,” beyond the fact they exist and have given the real field of pain medicine a very bad name.

Pain management is a specialty within anesthesiology. That’s right: anesthesiology. So, pain management doctors are MDs, they completed residency, they specialized in anesthesiology, and then they further specialized in pain medicine. They are highly trained in various intricate and delicate procedures, and concurrently have the best bedside manner of any doctor, nurse, or physician’s assistant that I have ever encountered. It’s a lot of work and effort, and not a profession that one chooses if he or she simply wants to make money writing prescriptions for hard core drugs.

My pain doctor always wants to take the least invasive measures to achieve marked improvements. In addition to the needles through my spine, she makes me work on the psychological aspects of CRPS. She makes me touch my leg with different objects to try to convince my brain that it doesn’t feel like I’m getting a tattoo on top of a road burn on top of a blistering sunburn. I am supposed to play soothing music and turn on an aromatherapy mist while I rub things like a scarf, rubber ball, and a metal ruler on my ankle (I haven’t been able to tolerate the ruler yet). It’s woo-woo; it’s pretty fluffy; it makes me feel like all of this is in my imagination. But it’s not. This fluff stuff is supposed to work in conjunction with the giant needles and the medication. I do the fluff so that one day, I can hopefully wear pants, and so that I won’t collapse in pain if my cat rubs against my right foot/leg.

And then there are the procedures. I only know what has been recommended specifically for me for my condition.  I don’t know if I have told you this already or not, but my all of doctors are the best. My pain management doctor is Dr. Leena Mathew of Columbia Pain Medicine. Columbia Presbyterian is a teaching hospital, so Dr. Mathew leads a team of doctors who are completing their pain medicine fellowship.

An IV was started for each procedure I’ve had done. A doctor starts the IV, and every time it has been fast, flawless, and painless.

They instinctively like to go for that one vein in my hand. It’s so tempting. It stands up at attention without a tourniquet. It’s a lovely and welcoming shade of blue. It is even shaped like a little smile, coyly beckoning the needle. However, having the IV in my hand really hurts. I have to hold my hand in a certain way so that it doesn’t poke up and put pressure on the side of the vein, and that causes it to rub against the tendons and bones in my hand. It’s tricky to concentrate on finagling a less painful position of an IV in your hand while an 8 inch needle is being meticulously threaded through your spine. If you haven’t experienced it, you can just take my word for it. So, the last two times, I’ve asked to have it put into my elbow vein. This vein is much more unassuming and takes it like a champ, never rolling or collapsing. The only caveat is that I can’t bend my elbow because that would put a kink in the IV line. The doctor who inserted the line said to me, “we will put the IV wherever you are most comfortable. We are pain doctors. The last thing we want to do is cause you any additional pain.”

Before my last procedure, I commented to the doctor how easily he started the IV. He smiled, and chuckled a nervous little giggle, and shyly said something like, “yeah, anesthesiologists tend to be pretty good at starting IV’s.” Oh yeah, duh. Good point.

Once my IV is dripping smoothly, two doctors usually walk me into the procedure room and patiently help me maneuver onto the table. It’s a complicated set up. The procedure is done under a live x-ray. The machine is C shaped and can move around my body to take images from different angles. It’s pretty incredible, but tricky to get in there with my boot and IV. Once on my belly with my IV bag out of the way, I am then further encumbered by a blood pressure cuff and a pulse oximeter. It sounds pretty horrible, as I’m sitting here typing it out. The experience is definitely not a party, but my doctors are so kind and attentive and really try to make me feel as comfortable as possible.

And then the needles. I get several shots of lidocaine, increasing in depth, attempting to numb the general area that will accept the big needle. The first time I had it done, they opted for some kind of regular old standard big needle. I felt like an alligator was chewing me in half. The second time, they used a much thinner needle. The thinner needle was easier for me to tolerate, but apparently it is a little more wily than the standard. The doctor had to go more slowly and delicately back it out slightly a couple of times before inserting into the ganglion. The third time, the thin needle was used again, but the doctor remembered exactly how to insert it into my body. The fourth time, most recently, while setting up the x-ray, the doctor placed markers on my back and, off the top of his head, remembered the angle he used for the previous injection. During the procedure, I thought I was still getting lidocaine injections, but the doctor was already in the ganglion. I felt the pressure on my thigh and my leg felt warm and I knew the medicine was going in. I mentioned how quickly they inserted the needle, and Dr. Mathew said that they now know my anatomy and they know how my body reacts and they have tailored the procedure accordingly.

My pain management doctors have learned about me. They know more about me than just my CRPS. They are interested in me as a person, not just a patient. They know how severely this ordeal has affected my “quality of life.” They are all rooting for me and want me to live an active life again. And throughout these nerve block procedures, Dr. Mathew speaks calmly and gently to me. She rubs my non-CRPS leg kindly while asking how I am doing. In the same soft tone, she coaches the doctor who does the injections and explains the procedure to the other doctors in the room. I’ve had the same doctor perform the past three of four nerve blocks. Before and after the injection, we have normal every day conversations: jobs, weather, places we’ve traveled. It’s a tactic to make me feel comfortable and relaxed. It’s nice. I wish every doctor could learn from pain doctors.

The only medication prescribed to me (so far) by my pain management doctor is baclofen to better control the spasms in my leg. (My neurologist prescribes the medications to try to control my misfiring nerves as well as some of the physical symptoms of CRPS.) Opioids have not yet been part of any conversation. My next steps probably include radiofrequency ablasion, with a possibility of a spinal cord stimulator. Everyone (my pain doctor, my neurologist, me) wants me to get out of this without the stimulator. The opioids would come only after all other options (including a remote controlled electric shock machine inserted into my spine) have been tried and after they have not provided long term relief.

I’m in this for the long haul, and my treatment probably won’t stop with the nerve block injections. Remission is the ultimate goal, but in the meantime, I feel confident in my doctors’ dedicated efforts to manage my pain.

A Gust of Wind

The pool was crowded and I was sharing a lane with a friendly ironman woman who swam perfectly straight lines on her side of the lane.

I was cruising, feeling strong and confident until a gust of wind blew the lane line. It drifted into my line and crashed into my right ankle. Well, it probably didn’t exactly “crash” into my ankle. I wasn’t swimming during a hurricane. Maybe the lane line gently nudged. But it was a direct hit to the anterior talofibular ligament, the ligament that suffered the most severe tear from my accident.

An electric jolt shot up my fibula. The interosseous membrane between my tibia and fibula caught fire. The water against my skin gave the sensation that all my skin had been torn and I was bleeding openly into the water.

My right leg dragged, paralyzed, as my left leg kicked and my arms pulled me to the safety of the shallow end. Unintentionally channeling Tonya Harding with her Olympic broken laces, I hoisted my leg up onto the ledge to inspect the damage to my CRPS ankle.

There was no fire, no blood, not even a mark from the impact. That’s how I know the hit was not really that hard. The lane lines are made of hard plastic. In earlier times, I’ve hit them with direct force when attempting to learn to swim the backstroke. They hurt. They leave marks when you hit the edges.

I stood on my left leg in the shallow end, slowly bicycling my right leg to see if I could get the “shock” to wear off. I tried to swim again. The message from my brain to kick my right leg was somehow muddled. My right leg would only sort of wiggle arrhythmically beneath me. I felt nauseous from the pain.

I swam one more lap and got out of the pool. I sat on a deck chair with my leg elevated, lamenting the unabating CRPSness of my leg, ankle, and foot.

And now, my ankle is swollen, my dumb leg’s skin is glistening, splotchy, and discolored. My foot is cold and tingly. The pain wants me to vomit (I’m holding it back…). The fibula feels broken, a hot knife is through the center of my ankle, a spoon is scraping out the interosseous membrane, and an invisible elf is inside my leg, separating the upper fibula from my tibia.

AGustOfWind

I’ve been watching a blinking cursor for the past 30 minutes trying to think of a hopeful and upbeatish conclusion to this post. I’m unfocused and drifting because of my medications and for some reason a Pharrell Williams song is overriding every thought I’m trying to have. I guess I’ll just leave you with the song.

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.